Interview with Marissa Spratley

Marissa Spratley is the Manager, Fundraising Campaigns & Volunteer Engagement at Crohns & Colitis Foundation in the Washington, DC metro area. Marissa is a Crohn's patient and another drug induced lupus survivor. Hear her story and how she is working to help others just like her.

Transcript

Hi, this is Brandy Schantz and you're listening to Living Chronic. Today I'm speaking with Marissa Spratley, and she is the manager of fundraising campaigns and volunteer engagement at the Crohn's and Colitis Foundation. She's also a Crohn's patient, so welcome Marissa.

Hi. Thank you.

So, so I, we haven't even started this podcast yet, but I'm already hoping that this is the first of many to.

because you and I have such a similar, similar story,

Yeah.

we've been through many things that are almost the same, and you're the first person I've met who really just went through, I've met a lot of people who've experienced drug induced lupus. I've met a lot of people who, you know, suffer from Crohn's or uc, but.

our lupus, drug induced lupus experience was very similar. So, um, you know, I just think that there's so much that, uh, you know, we can do together. We, we've talked about that before because gosh, you know, good intentions and bad luck I guess. So

exactly.

started, tell me, um, a bit about your story.

Oh, sure. Okay. So was first diagnosed with Crohn's Disease in, um, 2016. And so I actually just graduated from college and I was in like my first. um, full-time job after college. That was my first job at all after college. And it was like two months in, um, to that job where I was working at a desk and, I was having to like run to the bathroom like. of 20 times a day. And it was just to the point where, um, I was so fatigued from having like no nutrition in my body that I would, you know, wake up, go to work, come home, and just go right to bed. I wasn't eating dinner, I wasn't really doing anything or socializing. And I just remember being like really exhausted all the time and thinking like, is this normal?

Is this just like the work life balance is? Um, And so finally I decided I needed to like, talk to someone about it. Um, and thankfully my boss at the time actually had a brother with Crohn's disease, and so she was, she had mentioned to me like, I noticed that you have to run a lot, um, to the bathroom during the workday.

I think you should really get it checked out and see a gastroenterologist. and thankfully I did. Um, and at that point I had struggled like off and on my whole life with like i b s like stuff and. um, joint pain, like weird. I'd always had like weird health things like come up a lot, but I'd never been able to connect all the dots.

And so, um, I saw a gastroenterologist and was diagnosed with, um, inflammatory bowel disease and at that point it was, um, my, my diagnosis was, was ulcerative colitis at first. Um, cause I had so many, um, ulcers in my colon at the time of the, um, colonoscopy I had on like every two centimeters. So he definitely thought it was more ulcerative colitis based.

Um, And I was put on like the standard first drug, mesalamine and told to go on my way. Um, so I was, you know, taking like six pills a day, which was nothing at that point is nothing to me now. Nella, how may I take now? um, and nothing really changed. I didn't change my lifestyle. I kind of didn't really a whole lot of thoughts around it.

I was just like, okay, this is now something that's gonna happen. Um, until I got really sick, uh, about a year later and I started to, um, have like a lot of extra intestinal symptoms. So I switched and started going to the University of Maryland, um, medical Center. Have a great doctor there. she performed a colonoscopy and diagnosed me with Crohn's disease instead. Um, and immediately started me on, um, Remicade. So I started, um, infusions every, uh, six weeks. And, um, at first it worked really well for me. So for about six months I felt like pretty good, um, with my like gastro issues. Um, when I say pretty good, I mean like, you know better than I was, but not

yes. is always relative when you're talking to somebody with a chronic illness.

So, yeah, at that point before I started that I was going to the bathroom like 30 times a day. So it, like, there's like, you know, only so much worse it could get in that context. But, um, when I started the Remicade, it um, just like took a lot out of me. It, it like, was hard on my body from the get-go. Um, my second infusion, I had an anaphylactic reaction, so, Whenever I was having infusions from then on, I was always having to get IV Benadryl and like, uh, saline bags and they had to do them on like a very slow rotation.

So it took like four hours overall the whole time I was there, um, which is, you know, it was exhausting Um, then I think after about six, just, it wasn't a long time, six months, it was my first biologic drug too, is when I started having just like, I'd always had like a little bit of joint pain, but it was to the point. I mean, at my worst it felt like my, felt like my muscles were being. Snapped,

Mm-hmm.

like they were snapping. I would go to take a step and it, it felt like all of the muscles in my legs and my back, were just like snapping or like, they were like of ice and were just being broken. Like it just felt like this most excruciating pain, um, going up and down stairs was like killer. And I remember at that time I lived in like a basement apartment, so I was going down along set of concrete stairs. Um, and it was cold in that, um, Uh, stairwell two. And so like going down those stairs, I just remember every time I would put a foot down, it was like just screaming pain every, it felt like every tendon was being snapped.

Um, and. And you know, at that point, um, I thought it was just like joint pain. I thought it was like kind of associated with the disease. I started seeing a rheumatologist and they diagnosed me with, um, rheumatoid arthritis and ankylosing spondylitis. So, um, basically just some inflammatory based and, uh, or inflammation of the spine. So I thought, okay, like, you know, it's just that, but Remicade's supposed to treat those two, and so I thought I just needed to give it time. So I continued on, um, and I probably stayed like, that for about six months where I just didn't do anything because I thought it was normal, and it couldn't be helped kind of thing. Um, and then it got so bad where, I lost function of my hands and they were just like these claw like things,

Yes.

were like this because they were so, my fingers were so swollen, they were like double the size. My knuckles were huge and just like absolute claws. I'd have to, dip them in ice baths. I would get like buckets and just like hold my hands in the ice baths thinking it would help with the swelling. it, didn't it still hurt Um, I did a lot of, I, I swear I tried like everything, like the essential oils and the, the like C b, D bones thinking could help. And I, I tried like CBD b d tinctures because they're good for inflammation. Any kind of vitamin that was good for inflammation. I was taking, um, drinking like turmeric tea, like all of the things.

Um, I used heating pads religiously. but nothing was helping, and then I started to lose the ability to walk. like, could walk, I couldn't, I, I could walk with extreme amounts of pain, but I would fall because it was so hard to put one leg down. So it was like, I, you know, I couldn't walk because of the pain.

And so I just was, um, really like laying in bed and, and not able to do much. So I didn't go to work for a month and it happened to fall over the holidays and it was just, um, you know, the time of year was cold out, so it was just like a lot of. uh, like snowball effect. Um, that's when I realized like, okay, this probably isn't normal. Looking back now, I just should have definitely gone to the er, um,

during all of this. But I honestly was just like, they're just going to tell me like, you know, there's nothing they can do. Um, it's about like finding the right drug for my body. And, you know, maybe this is better than having like the worst GI symptoms I could be having. I just like wasn't, I wasn't like aware, I didn't know what to do. Um, And when I finally found, saw my doctor again, the January after, is when she was like, okay, this isn't normal. So I started seeing her, the rheumatologist, lots of doctors trying to piece it together, figuring out what was going on. And it probably took another few months of seeing lots of people for them to finally be like, okay, let's take you, you take you off of the Remicade. Helping your body at this point's only hurting. Um, and I started a high dose of steroid and all that stuff, as well. There's a little bit, that was a long version, but

You know, it's, I, I really relate with everything you say. You know, you're going through this and the first thing you think is, well, must be something with the Crohn's disease, I have all the inflammation,

right.

so it's clearly the Crohn's or, you know, the other diseases I may have in conjunction with Crohn's because one autoimmune disease usually brings one or two friends.

Um, . Yeah. And you do kind of feel crazy. It's interesting you never went to the er. I did.

I, I don't know why I didn't, honestly.

You know, I went and you know, one time I went, I did think I was having a heart attack cuz I was having the numbness in my arms and chest pain. And I thought, well that's definitely a heart attack. And of course they tested my heart. Everything was fine. But still no doctor noted that it was probably my drug causing that kind of treatment.

And even when I lost my ability to walk like you, I'm going in to see doctors and you know, you're like, well, yeah, it's not normal for somebody to just stop being able to walk, but I don't know what it is. So even still, it took so long to hear those words, drug-induced lupus. It, it really.

for me too. I remember I f I feel like the reason I didn't go to the er, I think I was, um, preemptively telling myself no, because I felt like I was gonna be told no kind of situation where, know, I thought they'd just be like, this is just you. This is just how it's gonna be. This is, maybe it's all in your head kind of thing.

Like, look fine. You know?

So, I mean, it's a real fear, 

was just scared of it. And I think too, I was so, honestly, I was so depressed by it, um, and immobilized to where like, I couldn't even get on my phone to like, look up if this was normal and look up things if I wanted to. Cause my claw hands could not, I literally couldn't even go like this, like the smallest tweak of my thumbs at like a huge. Shooting pain down like my whole arm. So it was just like I was so exhausted that I felt like I had no options, um, to be able to like advocate for myself. Like, I don't think I could have for myself in that situation. If I went to the ER or a doctor and they told me like, no, you're fine. Or like, you're imagining this, or like, you know, it, it's just you're this, or it's just you're, that I think I would've just down.

And so I think I protected myself from that a little bit.

No, you're right. Um, we've talked about this before. It's a very traumatic experience. It's very traumatic. Yeah. And the depression. Um, you know, I had very sui, you know, I was very suicidal at times, you know,

right,

and you're trying so hard, but know, nobody's able to tell you what's wrong.  you start to get scared to ever go to a doctor.

Cause you just don't wanna hear those words. It's nothing.

exactly.

you know it's in your head or you know, worst of the worst. You know? Are you eating gluten? You know,  know that. Take away your ability to walk . Um, so you, you get scared. You protect yourself. Who wants to hear that? Um, I still do it even after everything I've been through.

Uh, if I'm, I.

I do.

Problems. My husband will say, why don't you go to the doctor? And then I'll say, what's the point,

Right?

you know, I'll just sit here and see if it goes away.

definitely.

a very real fear. Um,

Yeah.

think,

no.

it was just, it was, yeah, the, the, the mental health side of it was just so overwhelming that you have to have some sort of motivation to like get help, right? Like, you

okay, the pain is driving me crazy, like I have to get help. But was so unmotivated and I just had like, Zero I mean, I had the complete lack of like, drive to do anything, like to bathe, to get out of bed. Like I would just move from the bed to the couch some days and some days not at all, because I couldn't even make it that far. Like

no amount of like, um, going on because I couldn't do it.

Like eating was hard

Yes.

it hurt, you know?

Mm-hmm.

definitely.

I, I cannot overstate the mental health aspect of this. I think I've often said when we're diagnosed with a chronic illness, we immediately need to, you know, when they give us that referral to.

Mm-hmm.

the gi or whoever your specialist is, we need that referral to a mental health professional immediately.

And that per person needs to be a member of our team. Um, cause I,

in hand,

yes. You know, and I think we're, we're all very strong people. We, we, we know that better than anybody, right? Like, if we say we're in pain, that means everybody stops, something's happening bad. So I don't, you know, as hard as it was painful. I think the mental health was the hardest part of it.

I think that was the one that almost sunk me. That was, that was what almost sunk me. It was the mental health, not the pain, which is what's so interesting.

Because

so isolating. You feel so completely, utterly alone when you go through it and you think like, Well, first of all, it's so hard to put into words, right? Like the only way I found of describing it, like I said, is like using the image of like, I had claw hands. Cause I literally couldn't, I could not open my hands.

Mm-hmm.

the mental image of like every tendon in me snapping is how it felt. But like no one can really. If you've not gone through it, you can't like understand what, what you mean. But

I had such trouble communicating it to people when I was going through it, right.

I was like, like all I know is I'm in extreme pain.

I'm so swollen and everything hurts. It hurts to breathe.

So, you know, um, hard to really communicate that though on like, what level can someone who's not going through that understand what you mean.

no, exactly. And I mean, I remember when I first, uh, started talking to doctors about what I was experiencing, I kept saying, . I feel like I'm in over-training syndrome, but it can't be that because I'm resting and I'm still not okay. And then the other thing I, because for me, the worst pain came in my quads and it felt like a sharp stabbing pain.

Like some, like somebody had just torn my quad  and it just felt so bad and they just looked at me like I was crazy. They were like, well stretch. And I'm like, no, no. Stretching was nothing. I was. Trying to get a note from my massage therapist, like write a note to the doctor, telling him that you can't unlock my muscles, please.

You know? Um, so it's hard to explain to anybody what you're feeling, you know, it's just, how do you put it in words? We need to come up with a graphic and then send that to doctors so that they can understand what we're trying to say when we say pain. Drug-induced lupus pain.

Yeah, definitely. And I don't know if doctors will ask you this at the time, but I remember my doctor's office, my gastro office, and. Um, rheumatologist office whenever go in, they'd be like, okay, on a scale of one to 10, what's your pain level today? it's just so funny because it's so, it's also relative, right?

Like now I go in and I'm like, I'm at a zero because compared to the pain, I felt nothing ever comes close to that. Right? And so at that point, back, I was at a 10, I was at an 11, like, when I was going to the doctors, I was so scared of them, like questioning me. I would be like, I don't know, like maybe like a six, I'm like a five. Like if, if I couldn't walk, if I couldn't use my hands,

I know.

couldn't like, you know, like move my pinky that much, you're outta 10. Like, that's, that's full pain.

Yes. Well, you know what's interesting? I think. Occasionally there's a doctor that really gets it

know that a chronically ill person when they say, when we say I'm in pain, it means, okay, this is like new chart, new chart. This. They, they get a different chart

Yeah.

the doctors could never, they're like, well, I don't, you know, we've done the test.

I don't know. And you know, there's been a handful of people throughout this process that I just look back and I think, thank goodness that person was there. I was so frustra. I was, I, I was just blazing through doctors when I couldn't find help, I'm like, fine, I'm going somewhere else. And I went to, I stopped going to Walter Reed because it was so difficult to get in to see any specialists there at the time.

and I only had the primary care and my, I was just not happy with them, obviously. I mean, they were of no help. So I switched over to Joint Base Anacostia, and they weren't helping me either, and I just needed one referral. I was like, look guys, just let me go to Georgetown and let me move this party over there and see if they can't help me.

the doctors were just like, incompetent and I could barely move. You remember those days when you can't walk and they're pain, and I somehow pulled myself into my car and drove to JBA, and I'm trying to get outta my car and get

Yeah. Which is, which is lit. Like, I can't imagine. I mean, cuz

onto a rail.

Driving at that point, like cuz your hands are

It was so painful

to drive because

really

one

I mean

like, like I said, it was like my hands and then like my back into my legs. So even just like putting your foot on the gas could

the pain.

I mean my, I was pale cuz it was, you know, you know it is that much pain going pale, everything, you know, and I'm doing this slow, I'm like leaning on these railings. It's taking me like an hour to get from the parking spot. Right next to the door. To the door. And I finally get inside and this woman sees me.

and she's not a doctor. She's not one of the medical professionals at all. She was a member of admin staff

Yeah.

she was just a contract employee. I, I don't know which company she worked for, give that woman all the bonuses, please. She sees me and she's like, I will fix this for you, . And she gives me her email address and her phone number and she says, be, be, you know, she's like, you be better.

Be careful, you know, try to, you know, take care of yourself. I got this. And she did. She, she got me into see all the doctors I needed to, and that's eventually I did get the diagnosis. So thank goodness for the brand new people that show up in your life.

No, honestly, I mean, I, I was very, very lucky and like I had really a lot of privilege going into it because I was at a really good like I had great care and honestly, my doctor like saved my life. Um, she, when I finally was able to voice like how much pain I was in and how much I was suffer. immediately was like, well, that's not okay. Like the quality of life that you have right now is unacceptable. And if it means that you failed this biologic after only a year at, in your early twenties, so be it. Like it, it's not worth it and moved, let's move on. Um, so I'm really grateful for her, honestly, and her whole care team. I think I almost like, it's so emotional for me to go back to that doctors now, because every time their staff sees me, they're like, gosh, you look so good. Like, we're so happy to see that you can walk in here and like you, you're by yourself. You could never come by yourself before. Right. Like, because I couldn't drive myself, I couldn't get myself from the parking garage to the, the, the building and all that stuff. Um, and you know, they're just, they're so sweet and kind and like, Whenever they ask, they still ask like, my pain scale. And if ever I say like, zero run, they're like, God, I'm so happy to hear that. And if I ever do a pain, they're like, Ugh. Like I, I hate that for you. Like they're just so like caring and in tune.

And honestly I have to say like out of. whole experience, like, like my doctor obviously I'm very thankful for, but it's like it was the infusion nurse who, when I had the anaphylactic reaction, like saved my life literally. And like the, the office staff who when I walked in were the first people I saw and were like, oh my gosh, come, lemme get you a chair.

Yeah.

their kindness literally meant like the world to me. Cuz at that point, like you feel so hopeless, you

so lonely and isolated. And so every little kind gesture like that

the world.

means the world. It changes things.

It really does. Yeah. I mean, yeah, it, it's just so helpful, I think, you know, for everybody out there who may be experiencing this or who has experienced it, oh, to just meet someone else who's gone through it. That alone just, just makes you feel like. . Okay. I, I'm not crazy.

Yeah.

know, I, we've been through this, it was traumatic.

We all survived. It's almost, you know, um, we, I always say, you know, being in the military, it's like a club, you know, like you all went through something very similar and we survived and we're here. And, um, same with the drug-induced lupus. It's like, oh, we did it. We did it. We made it to the other end.  and, um, you and I made it to the other end and had very similar reactions, which was another thing that I thought was so amazing because I got through and I immediately recognized that I was super angry and that was not doing me any good.

Not that it wasn't justified, but it was not productive. And I said, you know what? I've gotta do something that is positive and productive to get through this or else I'm just gonna end up dying. Because even though I was better, I was still the.

Mm-hmm.

Health aspect of it. I was just so depressed and just anxious and

all the things.

So I said, let me make something positive out of this. And I just jumped into a podcast, a blog, volunteer work.

I

you did the same thing. You jumped in with the Crohn's and Colitis Foundation, which is now your job.

Yeah.

you started, um, what was the first club you, or it was a committee you got involved.

Yeah. I mean, crazily enough. The drug-induced lupus is literally like, not just the disease, but the, the drug-induced lupus is what fueled it. Like what fueled my involvement where I got started. Because when I was laying on the couch and laying in bed and I felt so lonely, the mental aspect, I felt so low. and just unworthy because I could not get out of bed and do anything with my body. Um, I couldn't work. Like, I just felt so low that I was like, I know I need to find community. Um, Who have been through similar things or going through similar things because if not, like, I'm gonna lose my mind at that point. I didn't have like anyone in my life that had been through it and understood. And so I like created a, um, ins, uh, Instagram account that day because I was like, I just wanna be able to talk about my symptoms and not feel. Embarrassed by it and I want to be able to talk to people who get it. So I created um, anonymous Instagram to be able to talk and that's where I met people who were already involved with the foundation. and I stumbled actually into, um, the first committee I joined was the Young Leadership Board. Um, For Baltimore at the time when the, uh, in our Maryland chapter and, um, I got to meet other young professionals who were going through similar things, but also not just like sit and like be sad together, but also like do something about it.

And so like we were actively fundraising for the organization, um, together. We were, you know, trying to. Promote the, the Young Leadership Committee to other people to get them involved. Like we were just actively like trying to bring solutions to it, which I think was really helpful. for me at that point.

I needed something to keep me, like have something with hope I could work toward.

That's, that's the key. Something with hope because you feel so traumatized and alone that it's the hope. Um, I felt the same thing. I think that's a really good word. Hope. You know, once I

my first podcast and wrote, started writing my blog, I thought, you know what? I think I'm, you know, and I, I did start reaching people, you know, and now I've been meeting others who've been suffered from drug induced lupus and who've gone through these traumatic experiences and just having those people there to speak, it does give you so much hope.

Exactly.

Um, I think so I got involved in that way and then that's when I attended, uh, take steps in Maryland and I felt like that was the first time I ever felt like I was surrounded by a community of people who really understood. And at that point, I kind of, I mean, I wasn't on the other side of the drug-induced lupus quite yet.

I, I had. I think I had like, just ended Remicade and it was stripped, uh, switched to the next drug, but I was like recovering from it still. And I was on a high dose of steroids, so I had like the moon face and I had felt like I gained a lot of weight and I was still, I was really symptomatic and my gi at that point, cause I'd been on steroids and I, it was just like messing me up in all sorts of ways.

And so, um, remember just feeling like really comfortable. There because it felt like I belonged and wouldn't, you know, like people aren't gonna judge me if I had to like, take forever in the bathroom and someone was waiting, like it's not, people aren't gonna get angry or whatever. Um, like I knew that people understood why I had the moon face and I didn't have to like, feel self-conscious, you know, is huge. Um, and so when that happened, when I was at that event, I was like, this is. So healing, um, in so many ways. And, um, this is like, I knew like I wanted to get more involved because for me, I, I've always felt like I've been so goal, I'm always been very goal or oriented. I'm always like very volunteer based.

I've worked in non-profits my whole career and when I was, you know, even before that in college and high school, like I've always been service oriented. So there's always been that part of my extracurricular activities and everything, but. I felt like, okay, if I can get involved to take steps, like fundraising is a great way for me because I really like, like I've always been in that space in the fundraising space, so it's perfect, right? and I'm like goal oriented. I can set a monetary amount and help, like I have hope. to get to it and, and being able to contribute in that way just felt like really impactful. Um, knowing that my, my like time and my money was, and the money that I was raising from other friends and family was going to something that could directly impact my future

Mm-hmm.

quality of life that I have, like felt very powerful.

And it was also I think, for me to take. Control. Um, a little bit when I felt like I lost all control of my life, right? When I lost all control of my abilities. It was my way of being like, Crohn's disease. You're not taking like everything from

I have this amount of control and I'm going to use it. Um, and so steps in the foundation, I think gave me that outlet to be like, hopeful for something. Find community where I felt like I was supported then also feel like I was like actually making an impact and could help my future self. And all of the younger versions of myself, I always, oh gosh, I get so emotional whenever I think about it.

But I think about like the brand new diagnosed version of myself or like the

myself that was laying on that couch with drug-induced lupus but didn't know it yet,

Mm-hmm.

if I can do. If I could do say one thing to those versions of myself, it would just, you know, be like, you're, you are not alone.

Like there is hope.

there is, that's.

was

I asked everybody, you know, what do you wish you knew when you were first diagnosed? And that's all you know. It's almost always what comes out. There's hope, you know, don't let it take you down, don't let it. Um, and I think that's why both of us had those similar reactions to give back, to get involved, to do something.

Cuz all I think of each day is, you know, I got through it. , you know, life is chances. You know, you never know what each day is gonna bring and how you're gonna react. And I, I think to myself, I I, I could have ended, ended it all at some point because I definitely thought about it.

Right.

I, you know, when I asked myself how did I make it through, it's, you know, a combination of my husband who, you know, supportive and I, I just didn't want to.

Leave him with the trauma of having to, to discover my dead body. That for some, that was something that always stuck in my head. Like, no, I just don't wanna do that. And then my Crohn's support dogs, you know, for the people watching on video, they know I got my Crohn's support dog Sunny here with me. Um, but why did I not?

I, I don't always know. So can we do something to, you know, reach those people? That's, that's what's always on my mind. How do we reach the people who are in that dark place

may not. Be able to get out of it on their own. Maybe they don't have their Crohn's support talk or

Exactly.

you know, that that's something in their head that's saying, no, no.

You know, give it, give it another chance. Try again. Try again. Get it up. Get up, get up. Um, because is a very lonely and place to be, you know?

Yeah, definitely. And I think, um, Literally everything that I've done since that point from toward my career. Um, the only reason that I do this work is so that I could like that voice or that hope for one other person out there. I just like, Can never, I, I, I'll never stop thinking about how I felt and if I hadn't met people who understood how I probably, like, it would just be such a different experience.

Right? Like it

I don't, you know, I don't know how it would've ended up because

exactly.

thank God I didn't find out. Um, but just to. Go through it alone. And, and again, I came from a very like privileged place and I was able to not work for a month and I had a shared income. Like I wasn't living alone.

Yep.

Um,

I've said that so many times. I have healthcare and a husband

exactly.

who's like, don't worry, I've gotcha.

I had a really understanding job at that point. Um, and had like caregivers in my life. Um, and like I said, like not living alone is huge, but um, I just think about all the people who are in such different circumstances. You know, people who like literally cannot afford to miss a single day of work.

Um, not just with Crohns, but like to go through this, this experience where you're in so much pain, you physically cannot move, but like, they're either going to work or they're not gonna make rent, or they're not gonna be able to get groceries that week or get gas and,

And of course we learned the hard way, right.  being disabled in the United States is not an easy task, you know, if you're gonna be disabled, it's almost like, well, I hope you married well or have fa family with money to take care of you. It's a, it's a very, very scary and difficult place to be. Um, that's terrible.

I, I, I, you know, I, and I never knew as much as I do now.

Yeah, no, I didn't either. And then, know, also if you, if you do disability, if you are able to claim disability, then you aren't able to, um, You know, any money or really do anything at all in

revenue way, which is, I mean, it's not, it's not a lot of money. And if you're the sole provider for kids at that, like that's not realistic.

So,

we.

it just like, is something that I think about like so often, how privileged I was in that circumstance and still how hard and absolutely devastating it was for me. And so for people who might not have had that community or, um, who didn't have like, you know, the help financially and, uh, all of that, it's just, it's a completely different experience. So I just like will never stop talking about it and then I'll never stop talking about how. lonely and just, I don't know even the right word. It's just devastating. This

It's traumatic, you know, I that,

is like the perfect word,

I think so. It's been said to me multiple times by the doctors that I see, you know, and they've, I'll use that word. Well, what you went through was very traumatic,

right.

you know? Well, yeah. Yeah. It was, you know,  and, and, and, and that's why I just, you know, I, I, I hope to see many, many podcasts of, you know, between the two of us, because

Yeah.

I ask myself every day, what can we do to make this better?

You know, how do we ensure that this doesn't happen to anybody else? How do we ensure that

Right.

doctors know better, you know, what this looks like? So that when somebody who's taking a drug like Humira or Remicade comes in and says, my muscles feel like they're tearing apart. , the doctor can look at that and say, oh my goodness, it might be a Remicade, it might be your Humira.

Um, you know, or what can we do to make disability better for people like us? You know, one of the things I, I think, you know, you, you know, you know what it is. You go through all of this and I tried to, you know, just ram through it all. Cuz that's who I am. Don't need help, don't worry about me. Got it all together.

Um, but if we could have, you know, Something out there to help with employment, you know, and, and make it easy to find, uh, you know, I've had podcasts with people who, who, who, who deal with this all the time with disability and the paperwork. And the bureaucracy. And you've gotta be pretty on top of, you know, Bureaucracies to know how to even get what you can get to, to for help.

And you know, every time a doctor would say to me, when I'd say, I can't go to work like , they say, well, why don't you just apply for a disability? You know, and all the things you said. But on top of that, I don't want disability.

right,

I, I, I don't, I want to go to work,

right.

be. Like may, maybe I need to be retrained in something, you know, I don't want the disability monthly money.

Maybe have a program that will. You know, give me a skillset that, you know, can keep me, you know, working from home all the time, if that's what I would've needed. Or, um, you know, any, you know, any, all these things that could be done for people like us.

definitely. Yeah. No, I think that's a great point. And I think what I learned a lot I went through this experience, because I think I've always really, a lot of people, a lot of us rely heavily on, um, uh, like we equate our worth with our productivity and our ability to climb the rank at work, right?

And the ability to do the best work possible and produce the best results at work. And I'm definitely one of those, you know, former straight A student now burnout, like

of people where it's like I burnt myself out by

you.

Yeah, yeah. By just like going too hard by being. two, just 100% all the time. And I learned through chronic illness and through this experience with drug-induced lupus, just that it's not always realistic for me to give my 100%, because if I give a hundred percent today, I'll be able only to give 30% tomorrow.

just how it is. And so sometimes I need to conserve that energy and only give 50%, um, each of these days.

And you know, I don't just mean like even with work, I mean, you know, if. I have a, a day where I'm out at meetings all day, I, no, I can't go out to dinner with friends at night. I need to immediately come home, eat dinner, and go to bed like I need to recover. So being able to prioritize the things, um, and I mean, we live in society and in America where it's very much programmed.

Like the more you do, the more productive you are, the better. of a society you are, the more valued you are, the better mother you are, the better partner you are, whatever. And it's just so And so when we literally physically cannot do that, it's so easy to fall down on ourselves and just get so upset and feel like you're not worth anything. I think I struggled with that a lot during those experiences. just feeling like I was literally worth nothing because I wasn't able to get outta bed. I wasn't able to do the household work I was supposed to do. I wasn't like taking care of my partner the way I was supposed to be doing. I wasn't taking care of myself.

Like, you know, I wasn't being a good friend because I couldn't answer calls and texts, and I couldn't go to my goddaughter's birthday and, know, to even mention the work piece of it. Like I, I didn't go to work for a month. I mean, and that was like a really hard pill for me to swallow at first. that I wouldn't be able to do those things. Not just like that. I, you know, the idea that, okay, there's some things I literally, physically cannot push through. Like my body cannot do this and that's okay.

was like a really hard thing for me, um, to get through and, and to like believe that like, my body cannot do things and that's okay. doesn't make me any less worthy of a human. doesn't make me a bad person. Like that doesn't mean literally anything about me, other than the fact that my body can't do it. Right. Um,

That's such a

learned

from that.

I could remind myself of it, but you know.

It's so hard still.

I feel like I still feel like less of a person because I can't do the things physically I want, or you know, my big thing was competition. I can't, there's asking me, well, when we do a triathlon again, heck, if I know my body can't do it, it does make me feel like less of a person, know?

It took me, I mean, when I went through the drug-induced lupus, I think it was 20, um, 18 into 2019. And so it, it has taken me, um, literally since then. Like I still have to think about it every day, and I'm at a healthier point now with micro microns and with my joints and everything where have to, like, I'm not. Um, as symptomatic all the time. And so there aren't, like, not like missing week for work for a week, but I still have days that come up and so I'll get, you know, one or two of those days, like a month. And I literally still have to remind myself and my partner does a great job too, of reminding me.

Cause I'll be like, I can't do anything around the house today. And he'll be like that. That's, that's fine. Like, you don't have to like, you can just rest.

have to remind. because I feel like, um, once I got healthier again, you know, I, I put that expectation back on myself. And so just having to remind myself that there's nothing wrong with me for not being able to do certain things.

It doesn't make me any less good of a person. It doesn't make me less any worthy, any less lovable. That's a huge, huge thing too.

Yes.

But yeah, it's, it's, it's like, it's not something that you just like learn and then it's like all good. It's something you have to continue to practice and remind yourself constantly.

Daily. Yes. It's very difficult to get through. We, we've gotta come up with something. We, you and me. We've gotta come up with a program. We gotta put out a communication something.

Yeah.

What does drug induced lupus look like? Start calling these doctors. I think we can do it. Um, you know, I love your message of hope.

I, you know, like I said, every time I ask everybody, what do you wish you knew when you were first diagnosed? I'd love to hear about the hope, because I think that is what's so important to just know that it's not,

it may even take a long time, you know, like I,

was never that, the Humira never really, I mean, it would get me where I could function, but it was, you know, it was never that good.

Now that I'm on Stelara, I, believe it or not, I'm in symptom free remission.

Hmm.

I mean, it's pretty freaking I've, I, I've never been here since I've had Crohn's. It's almost . I'm like, oh, is this what this is about? So it can happen even when you don't think it can. Cause I thought, well, this is just me. You know, I'm gonna have, I'm gonna be having bad symptoms for the rest of my life here.

It's.

Exactly. Oh yeah. mean, I, I, okay. Two things to say coming out of that. One is I feel like I always, now I know and what I would tell other people who are like really struggling and suffering is that it always gets better no matter if it's a flare, if it's a bad day, if it's like the disease has been. Tearing you apart for five years. Like it literally always gets better. At some point gets better. And whether, you know, that get better lasts for a day, a week, a month, a year, 10 years, always happens. And then, you know, you have that to look forward to and you have that to enjoy. And so it, it's really hard because those like better periods can be small and they can be like, you know, a few in between, but you just have to like remember that. it's not always gonna feel that way. It's not always gonna feel like this. And that's temporary, as hard as that is when you're chronically ill, because it's not really temporary. Um, it's just, you know, temporary for this time. But, um, I just always have to remind, remind myself of that because that was something I too struggled with. Um, then what was the second part of what you just said that I wanted to make sure to Oh, okay. The, can we just talk about like the trauma then? So,

Yes.

when you come back, when you start to feel good, right? Like you, you're like, you're symptom free remission. Are you not terrified? Like I still am terrified every day that it's gonna happen to me again. Like I'm literally terrified. I don't know

Every time I have a little bit of like a, a pain or trouble breathing, I'm like, it's one of the drugs I'm on and I'm like throwing drugs and trying to figure out what I'm coming off. It's.

No, I'm, and I think too, for me, like, so I feel like I, I didn't get like a hard set resolution for my doctors. Like they were never, they never. Wanted to like completely confirm drug-induced lupus because I think they just were unaware. They didn't know, and they didn't know how to be like, yes, that's definitely what it is, you know? And so they were always like, yeah, like we, we think it could be this drug-induced lupus, but like, you know, it could just be your body's having a bad reaction to Remicade. it was just like the most non-committal and

Yes. Same.

unsatisfying resolution. Um, and so I think for me too, I have a lot of fear around, What if it just happens again? What if it like, it wasn't a fluke, right? What if it wasn't drug-induced lupus? Like what if that was just like a really bad flare? I don't know. I have this to where I just like struggle and I'm like, what if it comes back? Like, and I have the same exact thing where all if my, if I have a bad joint day where I start to really like get, I get like sciatic pain and if the sciatic pain starts to like flare up, I'm like, oh my gosh. it's happening again. If

swell, it's happening again and

just like terrifying. And then I go into like, I, like automatically assume the worst and I start to get really down on myself mentally, and

out a little bit and I have to like, I literally always have to like pause and be like, okay, what are the coping skills and the coping mechanisms that we learned? One is to never panic, right? One is to never panic. And you panic, you create more stress in your body. And that only leads to worse problems. So like, we gotta like calm down a minute. The second is to assess the situation right? And like, figure out what you can do. But, um, it's so hard because the trauma that you have coming out of that, the, I think the fear, it's just the fear that it's gonna happen to me again.

and, and I think it's even though, You know, maybe we'll never go through that again. Hopefully not. The fear is real. It's so scary to think about. Um, and wonder what if I go through that again? Especially because it was just so painful and traumatic. So the trauma of course, continues on with your fear and your anxiety that Jamaica do it again.

But it, it's also compounded remembering just how traumatic the actual event was.

Yeah.

it's.  horrific. And I think, you know, one of, there's so many things that I've learned out of this and, you know, we talk about hope, it's, it's gonna get better. But, you know, the other thing is, it's okay to say, I need help chow.

Say I need help. I, I can't do this by myself because it is so difficult. And of course now knowing we have a community. , you know, I want to somehow figure out a way to put together a more cohesive community of drug-induced lupus survivors,

Yeah.

every time one of us meets the other one, it's like, oh my gosh, you understand?

get it. Like we've all come with the same experiences and we've all dealt with it differently. Um, but the trauma's there, the experience is there. And, you know, again, you and me, we, we, we both responded so similarly. I just want nothing more than to find a way to make this better for everybody. Educate medical professionals, get everybody on board with understanding what drug ambu, uh, induced lupus is.

What are these, um, side effects? What is the FDA doing that's not communicating this to doctors? I have a new doctor. I like. He's really doing a lot to help me. He listens to me. He's an Ironman athlete, so he gets what I'm saying. I'm not just, you know, we speak the same language.

even he was like, well, you know, these TNF blockers, they, they can cause drug induced lupus, but the incidence is lower than all other drugs.

And I'm like, um, hey look, you're buddy. I didn't go to medical school, but when I can just go about.  and continually just randomly meet people who are like, oh yeah, you know what? I had that same reaction to Humira. Or, oh no, my brother just went through that. Or, you know, how family's going through that right Now.

That doesn't sound like a very low rare instance. To me. It sounds too like the FDA and these pharmaceutical companies were not doing enough to get this communicated to medical professionals and patients. Um, and you, and you can't easily, I, I told you, I'm just going through. Unreal loads of data from the that's taking me forever to read.

But there's no easy way to fi to find out, you know, as a, as a doctor in a perfect world, um, a doctor or one of the staff should be able to, every quarter, quickly download the adverse reactions to each drug that they prescribe and take a quick look at it to see if there's anything new or different that they should be aware of.

But you can't easily do that. It.

right?

So much work computing data and just like whoever's in charge of that over at the F D A is not a communications person

Yeah.

at all. Um, so yeah, if we could just get the message out there and, and just reach people. Cause I know you know, you, you and I felt the same way. So right now as we're speaking, recording this podcast, somewhere out there, there's somebody who feels alone depressed.

anxious, suicidal, and they're in severe pain cause they don't know what's happening to them and nobody can help them

Exactly.

this point in time.

Yeah, no, I think you're, you're right on. Um, and I think, um, you know, I just, I like wonder, you know, the statistics about drug-induced lupus. I wonder how much of it is just that doctors are. like almost a little bit hesitant to diagnose that and report it because they, it's I guess, hard to pinpoint which I, which I understand, but like, what do we need to do so that we can pinpoint it and that my doctor could have said to me like, and a hard, absolute answer.

Yes, this is drug-induced lupus.

Um, and here's how you can avoid it in the future. And here's, here's why it happened to you. Um, and here's what recovery looks like. Like, I think that's a huge thing too, is just no one would, you know, talk to me about what recovery from drug-induced lupus looks like. How long it takes.

I mean, I swear it took years, um, of, you know, and

Through it and I started my symptoms in 2020. My very last dose of Humira, I believe it was September 26th, 2021. And here we are, you know, March 13th, 2023, and I'm still dealing with the symptoms and every doctor has something a little different to say. , know, well be deal. You may never recover. You could be experiencing this for years.

Oh, your P T S D from the Army's making it worse. You know, I have all of these different things and nobody can just give me a quick treatment plan to say, okay, we'll be done with this in another four months. Yeah. So it's, yeah. There's just so much that we need to know. N ih, are you out there students?

Does somebody want a project? Just somebody, you know, even if we could just codify this in any way so that more doctors can understand, patients can understand. Um, as a matter of fact, after all the doctors I've seen, uh, for the first time, um, a neurologist I saw at Walter Reed, um, actually said to me, and it, it just, I, you know, it didn't even occur to me.

Which is funny because I feel like I've tried to cover all bases, but he said to me, you're not a candidate for a lot of drugs any longer because you've had this reaction. And I thought,

Hmm.

Oh, well, uh, you know, I guess he's, I mean, and no other doctor had said it, which says to me maybe they're not really looking at all the drugs may or may not be prescribing to see if.

this is something that could cause a reaction in somebody who's already had a reaction to a TNF blocker and had drug-induced lupus. So, um, you know, again, that says to me that there's doctors all over this country who just roll right past that and maybe di you know, uh, prescribe a drug to a patient who probably shouldn't have it based

Mm-hmm. . Right.

on previous.

It just makes me wonder, like what kind of research is being done on like, drug induced lupus on, you know, how it happens, why it happens, and, and, and, and who will it happen, right? Like, the work that's being done for I B D, I mean, there's millions of dollars going into the research, but, the specific little subset of it, um, is so tiny. mean, tiny uh, yeah, just thinking like, you know, they're, they're working on a project where, um, hopefully in the future we'll be able to take a blood test from a patient and be able to say what will not work and will work for them.

yes.

so with that, yeah. Like how can we use that and that, that study and that data to be able to figure out like,

gonna have your.

induced lupus happens to some people And, and

and Potomac Psychiatry, who I did, um, an episode with a couple of weeks ago, uh, Dr. Care, he, he does that kind of work. He'll, he, come to see Dr. Care, he will, you know, do a blood panel and he will come back and you, cuz you know how it is with

Yeah.

Crohn's disease, it's, well, we'll try this. Nope, that didn't work.

Okay, let's throw this at it and let's see what happens. And we basically lose months, years of our life just trying to identify the drug. , it's gonna work. It took me 10 years to get to Stelara. Um, but he does that and he says, Nope. Okay. The correct drug for you is Wellbutrin. And that's it. And I love that.

And you know, he's continually doing work on things like long covid and whatnot. So I'm excited to hear more about what Dr. Care, you know, may have come 

absolutely. That's amazing. Um, and I honestly haven't heard of that before. Um, so with, with that aspect of it, uh, with the mental health aspect. So I think that's like important work that's being done and I hope we started to talk about that more. Definitely.

definitely. Well, thank you for coming on. This is just part one. I want us to keep going every we, you know, come up with something else we're, I we're come up with something brilliant to, to address this drug induced Lupus problem.

I think

Um, And we'll, we'll have episodes, you know, part 2, 3, 4, 10, 12.

Congratulations. We finally got some legislation through something,

definitely.

to get this done. So thank you again Marissa, and thank you for being on Living Chronic.

Of course. Thank you.