The Heartfelt Journey Geri an Advocate & Writer

Have you ever found a friend in the most unexpected of places? On our latest episode, we're joined by Geri, a beacon of hope from the chronic illness community on Instagram, who opens up about her life with Lupus and Sjogren's syndrome. Her story is a testament to the strength and solace that virtual friendships can provide, especially when real-life connections to those who truly understand are few and far between. We navigate the all-too-common experience of medical gaslighting and the sheer determination needed to pursue a diagnosis, offering a powerful reminder of the resilience within us all.

Imagine conquering not just lupus but also staring down non-Hodgkin's lymphoma without the need for chemotherapy. That's the reality for one incredible New Yorker who shares her experience on our show. She delves into the perks of her healthcare network in the bustling city. She recounts how her robust support system became her lifeline through both her health triumphs and the turbulence of travel post-diagnosis. It's a raw look at the unpredictable nature of chronic illnesses and the immeasurable value of having a solid circle of medical and personal care.

Our closing chapter is packed with practicality and wisdom from our 'Spoonie Toolkit' straight to your ears. We discuss the small yet significant things that make a big difference in managing day-to-day life with a chronic illness, as well as the bigger picture of finding joy and setting goals amidst the challenges. We also shine a light on the support networks that buoy us, like the constant care from loved ones such as Lawrence and organizations like the Lupus Foundation of America. Join us for a heartfelt conversation with a fellow advocate and writer who's on a mission to uplift the lupus community with every word she types and every story she shares.

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

Chapters

• 0:42 Living With Lupus and Sjogren's
• 10:40 Navigating Health Issues With Support
• 16:52 Spoonie Toolkit and Life Advice
• 28:40 Connecting With Lupus Advocate & Writer

Transcript

Jen: 0:42

Hi my spoony sisters. It's your host, gracefully Jen, and I am so thrilled to introduce the amazing, the one, the only. This is Geri, and if you don't know her on Instagram, you really need to go check her out. I feel like I'm in the presence of a star I don't even know. I mean, you're famous to me. How are you doing today, Geri?

Geri: 1:04

Hi Jen, thank you so much for the intro. You were making me blush so much.

Jen: 1:09

And I can't help but tell everyone that this is actually our third recording, because for some reason we're having some problems recording today. But three times is a charm.

Geri: 1:19

Yes, yes hopefully, this is it.

Jen: 1:23

Okay, so you know, we finally get to actually talk to each other off of social media, and what a fun thing that is. It always brings me so much joy to connect with all of you outside of our social media.

Geri: 1:36

Yeah, and I keep telling everyone that I have like all of these virtual friends and you know I name drop people and then they're like who are you talking about? And I'm just like there are people that I've met over social media, absolutely.

Jen: 1:50

And my husband. He likes to refer to them as my fake friends, and I point out to them we do all kinds of shenanigans, we FaceTime together. These are people I spend a lot of time together with because we're we're busy supporting each other and lifting each other up through the things that we deal with, and to me, that's real friendships.

Geri: 2:08

Mm, hmm, yep, and like I don't know anyone in real life with lupus or like any other chronic illness, so again going on social media has been really great just to connect with so many others.

Jen: 2:20

Absolutely. I feel like it's kind of our safe place and it's a relief of a of a location we can go and talk with people that are like minded and understand what we're going through, even if it's not the same disease.

Geri: 2:32

Yep, yep.

Jen: 2:34

Okay, so you have a few different diagnoses, but let's start at the very beginning, with 2017. How, how did that begin for you?

Geri: 2:45

So in 2017, I started feeling joint pain, so like I would wake up in the morning I'd be like really aching on my joints for stiff sort of like. I had worked out a lot, but again, I did not work out. So I'm just thinking, like what the heck is like going on with my body. I was also 27 at the time, so I know people are like saying, you know, like once you're past 30, you know your body's never the same, and blah, blah, blah. So I'm just thinking like is this part of me now getting old? Like is this what you know I'm supposed to feel? You know, I'm just thinking like you know I'm not thinking anything of it at the time, but I'm just thinking, you know, maybe this is normal and you know I'm just going to go on with like you know life and like see what happens. But absolutely, but obviously you know that like didn't happen. It just got worse. It got to the point where, like I couldn't open like doorknobs I couldn't, you know, point right or like do my makeup. And then at that time I'm just like, okay, I got to go see like my doctor and just like try to see like what's going on, because this issue isn't like getting any better.

Geri: 3:53

So I go explain. You know, I'm just like I'm feeling these joint pains. I don't know what's going on but because, like my symptoms weren't like visible, she sort of just like brush it off. I was just like you know what, just you know, take some Tylenol, do some exercise and stretches. You know it should like go away eventually. And I'm thinking, you know she's a doctor, she knows, you know she knows best. So I'm just going to go based on her advice and, you know, just go on, you know, with my everyday life. Not knowing that was like medical gaslighting. I had never heard of that term until you know all of this has happened. I didn't even think you know that occurred when you go like see your doctor. So that was like a big shock.

Jen: 4:32

Absolutely so. How did you handle that so?

Geri: 4:37

again, I just had to just brace, like the pain, just you know, just continued my everyday life, but it got to a point where it got severely worse. I ended up having, you know, chest pain, a shortness of breath, and then my legs started to like swell up, my legs and my feet. So from then on, my symptoms are now like super visible. So I went back to my primary care or just like, okay, something is like wrong, like you can physically see it now, and that's when she had her like aha moment, like oh yeah, there is something wrong with you. Let's try to see what's going on.

Jen: 5:13

So before they diagnosed you with lupus, did they have any questions that it could be anything else, or did they go straight to lupus?

Geri: 5:20

They had no idea what was going on. So that's why they just did like a whole bunch of tests with, like, the swollen legs and feet. They thought, oh, maybe it's like a blood clot or something. So I remember I had to do like an ultrasound, I did echoes, I did a bunch of blood work. Again, it was just basically trial and error. They had no idea what, like what it was. And I think because she was just like the primary care, she wasn't, you know, a specialist to anything, so she just just did whatever test. And then I was just like refer me to so-and-so because like, obviously we're not getting to the bottom of it and you know. So once you did that, I got referred to a rheumatologist and then the rheumatologist was a Vultino pinpoint, that it was lupus.

Jen: 6:04

Okay, so did the lupus, the rheumatologist, jump to lupus immediately, or did they question any other ideas? No-transcript.

Geri: 6:13

So they initially thought it was lupus and then put me on hydroxychloroquine and prednisone. So basically she was just like if your labs get better with this medication, it's lupus. So I was like, okay, okay. Okay, so my labs did get better. So she was like, yeah, it's definitely lupus. And I also did go to two other rheumatologists to just, you know, I was sort of still in like that denial phase. I'm just like I know something's wrong with me, but you know, I don't want it to be this. So I went to like two more rheumatologists and they ended up telling me you know it is lupus. So you know, like I said three times the term. So from there I sort of, you know, started taking it all in and I'm just like it's sinking in, like I have lupus.

Jen: 7:02

Absolutely and and so your treatment care plan did you feel like it kind of had you in a state where you felt kind of normalized, or did you still feel a lot of the symptoms that were happening in the beginning?

Geri: 7:17

So thankfully, with the hydroxychloroquine and the steroids it did help with the joint pain so I did see some relief on that. So you know they're thinking okay. No one's to joint pain is good. You know we're on the right track. But my other labs were still, you know, out of whack. So it was a lot of trial and error with medications and that's what I see from a lot of lupus patients is that it's not that like one size fits all. So it really is based on every you know everyone has a different you know path when it comes to medications.

Jen: 7:52

And it was sometime shortly after that you were diagnosed with chogrens, correct?

Geri: 7:58

So it was six years later, okay, in 2023. So again, it was a lot of ups and downs with like medications. I was on hydroxychloroquine, I was on steroids, I was on cell seps, I was on lo-starin because I also have issues with my kidneys, so they had to add on that medication. But with that medication you're not allowed to, you know, get pregnant and I was at that age where, you know, we're thinking of starting a family, so we had, like, weaned off of that medication and then I was put on a muran so that one is safe for pregnancy. So again, that was all on and off within the six years. And then, after that, I developed symptoms of like dry mouth and I found a lump near my neck and from there, you know, we decided to do an MRI and biopsies and then that's when we found that I had chogrens and non-Hoschkins lymphoma.

Jen: 9:00

Okay, so for listeners that aren't familiar, what exactly is chogrens?

Geri: 9:05

So chogrens is when your immune system attacks your glands and the eyes. So it's sort of like a sister I guess a sister disease to lupus, because lupus basically attacks a whole bunch of your organs and then chogrens is like your glands in your eyes.

Jen: 9:22

So you're just getting hit from everywhere, and then on top of that, to diagnosis with the non-Hodgkin's lymphoma.

Geri: 9:29

Yeah.

Jen: 9:31

How on earth did you handle all of this being thrown at you?

Geri: 9:35

It was a roller coaster. I sort of just like I guess like I went to like a mini-depression because again I'm thinking, okay, lupus, that was already a struggle. And then, you know, I sort of accepted that. And like six years later I'm just like, okay, I can deal with this. And then I get hit with not just one, but two. And then you get hit with like the big, you know cancer word. So it was just a devastating like time point in my life because I'm just like like I was 30, 33 at the time. So I'm just like what else, you know, can like go wrong? Like I already thought like this was like the biggest challenge. And now I got like hit with this. So it really took me a while to, you know, just get out of that funk, because I'm just like I like I don't know like why am I like being punished for this? Basically, like what I was feeling like, why me Like, why is this happening?

Jen: 10:28

You know, and I think you you brought up exactly what most of us think. We go to that conclusion of why am I being punished? What did I do wrong? What and why is this happening? Did you feel like you had a good support system as you were navigating all of this?

Geri: 10:44

Yes, thankfully, my support system has been amazing. My husband, who, at the time when I got diagnosed with Lupus, like we, you know, we were like we had just been dating not even a year and he's been through it like since the very beginning, so he's seen me up and down. My parents have been amazing. They, they all come with me to you know, like my doctor's appointments. If I need, you know, someone to pick on my medication or anything like, I have someone to always turn to.

Jen: 11:14

That's fantastic and for those that aren't familiar, you live in New York City, so that's got to be an amazing place for for getting the proper care that you need. How do you feel about that?

Geri: 11:27

So New York City has this like pros and cons. It's super expensive but the healthcare system here I think is like beyond amazing Cause just getting my diagnosis with like Lupus it took less than you know a few months and I know on average it takes maybe five to six years to get a Lupus diagnosis. So it was very quick. Once you know we got the ball rolling Within the month that you know my, my symptoms were like visible. I was able to get a diagnosis. I saw three rheumatologists you know within weeks and I know for others it takes like months just to see one. So living in New York City, you know is expensive but the amount of like doctors and like just hospitals just in the area, it's abundant. So I feel you know it's expensive. But then there's also the pros of like your, your you know healthcare system and your like care team is like top notch.

Jen: 12:31

Absolutely, and I mean, what better place to be if you're going to be diagnosed with all of these conditions, right?

Geri: 12:38

Yeah, and then I my my doctors are sort of just like all in like one facility. I know others they have to go to like different like I guess, clinics or like offices, just to see like their doctors. But mine is under like this one hub so like they can all see like each other's notes. So if, like you know, I need like a medication upgrade or like whatever, everyone talks to each other, which I think is fantastic, Like I don't have to do anything, Like I don't have to send them, you know, my, my doctor's notes or whatever. It's literally all in the system and they can like all talk to each other, which I think is amazing.

Jen: 13:15

I think that is amazing, and we have that over here too. I live not too far from Portland and I think that everybody should have that option available to them. I think it's wonderful when our doctors can communicate and work well together. It really does a better job for us as a patient.

Geri: 13:33

Yep, it lifts that like one less burden because, like, we already have like a million things to do.

Jen: 13:39

Absolutely so. Okay, what did your care plan look like after the newest diagnosis last year?

Geri: 13:47

So with my non-Hushgins, I had to start around a Rituxan and because you know we caught this early, thankfully I did not need chemo. So they said like we'll just start out with a Rituxan. So I did like four rounds of that and now I'm basically on like a wait and watch approach. So thankfully this type of non-Hushgins lymphoma is slow growing. So we're now just basically, you know, like doing follow-up scans and just monitoring it and then from there we'll see, you know, if we have to do anything additional to the non-Hushgins. And then from my Lupus and Chogrens, I'm still on the hydroxychloroquine and I'm also still taking a Muran.

Jen: 14:34

Do you feel like everything's working pretty well for you right now?

Geri: 14:37

Yes, but then again, you know, I thought it was working really well, you know, last year, and then I got hit with something else. So you know, our bodies is just like you never know, it's super unpredictable.

Jen: 14:53

Absolutely, and you know several of us have enjoyed watching all your fun travels and on the last trip you had you had kind of a scare with some swelling. Can you tell us about that?

Geri: 15:05

Yeah. So after my diagnosis of the non-Hochkins, I've traveled twice and two for two I've gotten some swelling like on my face, but thankfully my doctors are attributing that to the Srogrens and saying because again, srogrens does deal with your glands, so it's like my parotid gland. I guess you know the stress from traveling or what I don't know, but I guess it's just it doesn't like it when I like being like super swollen and like puffy, but then eventually it goes away. So like that was just a good thing. But I do have to keep monitoring it. So I guess, like just just traveling and the stress of everything on my body is just like my body is like, okay, you can have fun, but you know calm down too.

Jen: 15:49

Okay, so when this happens to you, is it painful?

Geri: 15:53

Thankfully. No, it's not painful, it's just like. It's just like a hard lump on, like the side of my face.

Jen: 16:01

I feel like that would be tolerable. I just would. I think the self conscious, yeah, yeah, the self conscious part of us is like okay, I don't want everybody looking at me, please don't look at me. I'm fine, go away.

Geri: 16:14

Yeah, and then that the odd thing is that with the non-hushgans, the lump that I had was also painless. So again I'm thinking is this another? Is this like a cancerous lump? Is this a shogun thing? Like, again, when you're just you know, like when you feel a lump, you're just like what the heck is that? So again, I don't know myself, you know what is actually happening until you know, like I just have to keep on monitoring and hope, and you know, hope for the best and that it just goes away.

Jen: 16:40

Yeah, and at the end of the day, I mean that's really the best thing that we can do is just keep monitoring, let our care team know what is going on. Whenever we notice it, you're doing all the right things.

Geri: 16:50

Yep, yep.

Jen: 16:52

So tell us about your Spoonie Toolkit. What are those top must haves?

Geri: 17:00

I think the number one thing is definitely my medication. That is always with me like no matter what. I need that for, like survival. Another thing is a water bottle. I drink like so much water and again I attribute that to also, I think, with the whole shogun thing, like I don't know, ever since that new symptom, my mouth has just been like super dry and my throat is dry and like I always just need to just like drink more water than usual. So I always have that like by my desk or anywhere. Another thing is probably a stress ball. Like you know. You just need to relieve some of that stress in your life and those are just you know the.

Geri: 17:46

Thing.

Jen: 17:48

Definitely that's a good one. Another thing oh, were you going to say something?

Geri: 17:55

No, you can keep going. Another thing on my list is probably an ice pack, just for, you know, those days when it's just like you have a headache or migraine or anything or like joint pain, that usually helps with that. And then, how many is that now? One, two, three, four? What else do I have in my kit? I guess a thermometer. Yeah, that's important.

Jen: 18:25

That is important. All right, let's see what is my next question. Do you hold the treasure map of wisdom for fellow adventurers on a parallel path?

Geri: 18:41

So I guess yes and no, because, again, everyone's journey is different, but I do have some tips and tricks that have helped for me, and it's pretty general how do you talk to your doctor? How do you advocate for yourself? So I do have some of those things on my Instagram page. So if people do need advice on how to talk to their doctors or what to do in a flare, there's tips on there and, of course, everyone is different when it comes to their day to day.

Jen: 19:16

I could not agree with you more. How do you keep that sunny disposition with all the challenges that you face?

Geri: 20:27

So it's definitely not hard and it's like a roller coaster of emotions. One day I'll be super happy, but then something will trigger me out of the blue. I'm just like, oh, this is my life. But again, it's never a constant feeling. There's always something that will trigger that happiness or that sadness, but I'm never in that funk 100% of the time. It comes in waves basically, and I think my motivation is definitely my family and my friends. Without them, I really don't know where I would be.

Jen: 21:10

So, to go along with that, what's your secret recipe for living your most fabulous life?

Geri: 21:17

I guess just hoping for future experiences, because I have a bucket list and I'm just like I want to do this, I want to do that and I'm just waiting to just cross that off. So to just have goals and just something you want to achieve later on, whether it be traveling or a job or something, just something that is attainable for you.

Jen: 21:44

What are the top things on your bucket list?

Geri: 21:46

So definitely travel, I still want to travel, and even within the United States, I want to visit all 50 states. So that's one. I am a Disney lover, so I told my husband we need to visit all of the Disney theme parks.

Jen: 22:02

I love it.

Geri: 22:05

And then just trying out new foods. Me and my husband loved trying out different restaurants and just exploring different options, and I think that's another thing with New York City. There's an abundance of anything you want is at your fingertips. You can find something open at 2 in the morning, whatever, if you're going to find something. And then Broadway shows. I am a Broadway junkie so I am always on the hunt for a new show.

Jen: 22:36

Do you have a favorite that you've been to?

Geri: 22:40

My top one has to be Spring Awakening. It was a show with Leah Michelle. And then my second one is probably Wicked. I think everyone knows Wicked. The production and everything in costumes is really, really good.

Jen: 22:58

Okay, that's good to know. I think the only one I've been to is oh my gosh, my mind's gonna go blank. Phantom of the Opera. I went to see Phantom of the Opera.

Geri: 23:09

Oh, that one is really good too. I saw that twice.

Jen: 23:13

I went to see it when I was 16 with my friend for her birthday and it was amazing.

Geri: 23:18

Yeah, that show was really good.

Jen: 23:21

Who are li-? Who are what? Who lifts your spirits? On a difficult?

Geri: 23:25

day, definitely my husband, my husband, again has been with me through everything. So, again, like when we first started dating, you know, he saw like the healthy side and then when I was going through Lupus, when I was going through you know, the showgrounds and the non-Hoskins, he's been there with me through like everything. So he knows what to do to, like, you know, cheer me up and to just get me out of that funk.

Jen: 23:49

What's your husband's name?

Geri: 23:51

Lawrence.

Jen: 23:52

Lawrence, we're giving you a shout out. You are amazing, you are loved and you are a wonderful support system. Not that I know if he's gonna listen to this, but we're giving him a shout out. Anyway, I will tell him to listen to this. All right, can you point our Spani sisters towards some of the? Do you have some favorite articles or blogs or accounts that you follow that are jam-packed full of useful information?

Geri: 24:19

So when I first got diagnosed with Lupus again, no one in my family has Lupus so it was like a big like learning experience for like all of us. So I had to just, you know, rely on like the internet for that. So one of the sites that I did go on was Lupusorg, which is the Lupus Foundation of America, so on there there's a whole bunch of just resources, articles, and it was just like, I guess, like a go-to guide for you know, all things Lupus. So that website is jam-packed with like information. So I learned a lot of things on that.

Geri: 24:54

And then, social media-wise, I wasn't, as I guess, savvy back then, so I didn't know much like how Facebook worked or Instagram, so I didn't realize that there was like this whole like, you know, like realm on social media that like had all of these like information Like. I wish I knew about it when I was first diagnosed, because I don't think I looked into that until maybe a few years later, you know, when everything was just sort of you know, at a status quo. But as far as like Instagram accounts, the ones that I usually follow is Freca Living Lupus Together. She has so much great information on her site. Another one is the Lupus Dietitian. She has a lot of you know tidbits on like food and health and nutrition, so I've learned a lot about on her page as well. There's just so many information that we can just find on like Instagram or even like Facebook groups that I'm just glad again that I'm living now instead of like 10, 20 years back then, Because again I don't know what I would have done if I was diagnosed then.

Jen: 26:07

Absolutely, and I agree, I follow all those same accounts and I don't even have Lupus. But there's a lot of overlap in some of our diseases and, quite honestly, I just I'm so curious, I kind of geek out on finding out all the information, even if it doesn't pertain to me. I guess I could see a purpose for it even in my own life.

Geri: 26:31

Yeah, it's sort of like we have different chronic illnesses, but we can still relate to it Like we're also going through that same journey together.

Jen: 26:41

Absolutely 100%. Is there any last bit of advice that you'd like to give to Spoonies out there that are listening?

Geri: 26:48

I guess the one thing is that we shouldn't let our chronic illness whether it's lupus or churgrins or non-hodgepins let it define us. When I first got diagnosed, I thought my life is over. I'm like what am I going to do now? I just didn't realize that I could still do so much more, even with a chronic illness. So I tell people that this is just a part of our story. It's not our whole story. It's like a chapter in our life. There's still so much that we can do ahead.

Jen: 27:24

I agree. Is there anywhere that you want to share that you've been? Are you on any other podcasts featured in any books? Is there anywhere that people can find you outside of social media?

Geri: 27:39

There is one, amanda Che. She just recently wrote a book, the Girlfriend's Guide to Lupus. Oh my God, I'm forgetting the exact title on that.

Jen: 27:50

Actually, that is it.

Geri: 27:52

There you go, brain fog at its best.

Jen: 27:56

Yep.

Geri: 27:58

But she has an amazing book and I was lucky enough to partake in that. So I think all of the Lupus warriors definitely need to take a look at her book because it is jam-packed with so much information. And again, I wish I had this when I first got diagnosed because again, it fills in so many gaps that you're just like what should I do now? So definitely that is a good one.

Jen: 28:23

Yeah, and it's so, so good. She has a whole section full of advice on what to say when people say the stupid things to us.

Geri: 28:32

And like some people don't even realize it, but I'm just like hello. Yes, you should not say that.

Jen: 28:40

Absolutely Okay. Where can everyone find and follow you?

Geri: 28:44

You can find me on Instagram Everyday Living Lupus. I also did forget to mention I am also a writer on Lupusnet, so I write articles basically just on like just my everyday experience with Lupus and you know again tips and tricks that can help Lupus warriors along their journey.

Jen: 29:04

Wonderful Well listeners, if you're not familiar with her, you need to go find and follow her. I'm telling you right now you won't be disappointed. Thank you so much for taking the time to chat with me and to be on the show. Thank you so much, dan. All right, spoonie Sisters, until next time. Don't forget your spoon.