Chelsea: Hello, everyone. Welcome to today’s episode of The Real Life Show: Living with a Chronic Illness. We have a solo episode today because we realized that while we tell a lot of other people stories, we haven’t told Cassie’s story. And so, we thought we would change that today. So, if you hear a little bit different in the sound quality, Cassie’s on her phone instead of her computer today. So, if you don’t like the sound quality, I’m sorry, I guess go listen to a different episode.
Chelsea: But it’s really not bad. It’s fine. So, hi, Cassie.
Cassie: And there might be some nice peaceful wind chimes in the background, too.
Chelsea: Yeah. I heard a little bit. I think it sounds nice. It’s cool. Cassie’s outside. She’s very relaxed.
Cassie: Yes. I have to. I’m on my phone today because I had to do mom life also, and my son had piano, and he’s got in-person piano. And Chelsea and I also had a meeting scheduled to do this recording. And so, we’re just combining both of them, and yeah. I’ve done nothing to prep for this episode today, but hopefully, it doesn’t need much prep because it’s freaking my own life. So, I can hopefully talk about it easily.
Chelsea: I think you’re going to be okay. I believe in you.
Chelsea: So, it’s kind of fun. I get to interview you for once. This is cool.
Cassie: I know. I was going to say actually this feels very weird. I feel like we’re just FaceTiming and talking on the phone because I’m not at my desk with my microphone and I feel like really off.
Chelsea: Okay. It’ll make it even more authentic and even more real.
Cassie: Yeah. Okay.
Chelsea: So, you’ve told our listeners lots of times that you have Crohn’s disease, but we’ve never really talked through how you got your diagnosis or what that looks like for you. There’s been kind of bits and pieces as we’ve talked to other people that it’s come up with, but can you start by saying and telling us about how you knew something was wrong with your body, and what you did to figure out what was going on?
Cassie: Yeah. Okay, yeah. See, this is going to be good. Okay. So, are those wind chimes okay? It’s just the wind really picks up right when we press record.
Chelsea: It’s fine. Let’s do it.
Cassie: Okay. So, yeah. That’s a really good question. So, I would say that honestly, everything really started in–okay. So, I’m going to try to do the condensed version as best as I can while giving important details because all of our other interviewees do such a nice job of that. Alright. So, I would say that things started a little bit in 2011. For me, I didn’t feel that way, but at the time, my husband thought he got–well, he wasn’t my husband then but my boyfriend, whatever, my kid’s dad. We were in a relationship together, whatever. So, back then in 2011, my mom had passed away and I would have like a few little symptoms that he always was like, “I feel like you’ve got something wrong with you. I wonder if it’s the same thing as your mom. We really need to see somebody about it and get it fixed.” And I was always like, “I think I’m fine.” But most of the symptoms back then, and this is nine years ago, were that I had really poor circulation, and my toes would turn black, and my feet would turn black, and I would even lose feeling completely on the bottom of my feet, and I would get a lot of swelling, and the same thing would happen in my hands. And that really freaked him out, but I was sort of like, “It’s not that big of a deal.” So, fast forward here–
Chelsea: I mean, that would freak me out. That freaks me out just hearing that happen to you. I’m like, “Oh, god.”
Cassie: I mean, it was pretty alarming. It was very noticeable. People would definitely notice it, but I was so consumed with the grief of losing my mom that year that I really feel like I was just trying to get a handle on keeping ongoing, that I was just sort of like, “I’m fine.” And so, that went on and progressively would be worse. It would sometimes really hurt my feet. I even remember him like–I think we were in a hotel in Seattle or something and him pinching the bottom of my feet after getting in the shower, or maybe even pricking them with a pin or something, and I couldn’t feel shit. And so, he was like, “This is not normal.” And I was like, “I mean, I’ve been fine living with it for a couple years. It’s fine.”
So, fast forward a couple years, 2013, so two years of off and on with that. And I guess I should maybe just add in there during that time, like I said with losing my mom, I had also been diagnosed with some PTSD at the time because she was really sick for six years and it was really hard for me when she passed, and I didn’t sleep. I really didn’t sleep for like a year. And when I say I didn’t sleep for like a year, I really didn’t sleep for like a year. And so, I was also having some anxiety. And I remember that a couple therapists wanted to put me on anti-anxiety medication, but I’ve never had a problem with anxiety beforehand. So, I was just like, “No, this is circumstantial. I just lost my mother. Of course, I’m going to be feeling like a little on edge.” So, I was like, “I don’t need medication,” and I kept going.
So, fast forward a couple years at 2013 and my, at the time, boyfriend and I were going to get married that year. We were going to get married in November and I started having a lot of issues with pain in my butthole that year, actually, that summer, summer of 2013. And again, long story short, I at first thought it was like hemorrhoids and was using all sorts of treatments for that at home, then I ended up seeing a doctor. I don’t think we had insurance at the time, no. I can’t remember. But that was part of it. Yeah. I think I was just going to the health center or whatever. We didn’t have insurance at the time, and I had an exam and they’re like, “Oh, no. It’s not hemorrhoids. Actually, it’s a fissure.” And I’ve had a fissure there on my bum hole from having my son. I had a pretty intense delivery with him in 2008. And so, I was like, “Oh, dang it, it’s this fissure.” And a fissure, for those who are listening, it’s almost like a little tear on your butthole. And the way that the doctor described it to me was it’s almost like if you take your knuckle like your finger knuckle, and if you get a paper cut on your finger knuckle, you know how freaking bad that hurts whenever you bend your finger and stuff.
Chelsea: Oh, it’s bad.
Cassie: It’s like that on your bum hole. It really hurts. So, then I was like, “Okay. I have a fissure.” And then, it was like, “Or do I have hemorrhoids?” And I would have some bleeding. But I just kept going. I would sometimes have a lot of pain in my bum and I couldn’t sit. And I actually remember like reading “Fifty Shades of Gray” laying on my tummy on my front porch a lot that summer. And I also remember just standing in the kitchen reading books because I couldn’t sit down. It was a big deal. It was a lot of pain. I remember getting weird angles of my phone down there so I could take a picture of my bum and see what the hell was going on, to see if I could see anything, like all the things.
So, it was kind of a rough summer. And then, I got married that fall and things were doing a little bit better. I do remember road tripping back from Kansas to Montana where we lived at the time and having a lot of pain in the car, but it was also just like–I was like, “It’s not a big deal. Just keep going.” So, then, that was 2013, fast forward again to February, or I’m sorry, January of 2015. And this is really where things started to truly go downhill for me. January of 2015, I had a miscarriage. So, I thought that I was 11 weeks along when I started bleeding and had found out that I was having a miscarriage, and then they told me that actually, the fetus had died at five weeks, and my body just didn’t do anything to be rid of it. For six weeks, it was kind of crazy.
So, that already was a little bit odd. And then, I had a hell of an experience with that miscarriage. I was bedridden. It put me out for like six weeks. I was really sick. My blood pressure, I was bleeding a lot. I had so much pain, abdominal pain, cramping. It was a really bad time. Then I was experiencing a super big amount of plummeting depression, and I missed my mom, and I was going through something, and my marriage started having some trouble during the time, and it was just a really shit month. So, the month of January, I missed work. Like I said, I was bedridden, I was having a really hard time, I kept having to call the doctor and be like, “I feel like something’s wrong. I want to pass out. I’m bleeding a ton.” All this stuff, and they’re like, “You know, it’s fine.”
And my friend, Jessica, who has been on the podcast with us, had started doing Beachbody workouts shortly before this. And so, when I started recovering a little bit, and I was incredibly weak, and my spirits were really down, it was a really rough time for me. She was like, “Hey, you should start doing these Beachbody workouts with me.” The Beachbody community is super supportive. It’s just positive and uplifting. It’s a nice change from regular social media. You can get your strengths back. And I was like, “You know what, I do need that.” So, I started with Insanity Max 30, and anyone that’s done Beachbody to start with like Shaun T Insanity Max 30 was like, “What the fuck was I thinking?” But I was all about it. I was like, “I need the endorphin.” And it really helped me with my depression at the time, and the anxiety I was having. And my marriage was at a really low point. And the working out totally helped me to feel more capable and strong, and it helped with the depression, absolutely, 100%.
And the community was starting to uplift me, and I was just like, “Oh, my gosh, this is really great.” But the weird thing was that every time that I would work out, my whole body would swell up. My feet were turning black a lot, my elbows were swelling, my hands were swelling I couldn’t wear my wedding ring, my feet would feel like I was squeezing them out of the shoes after the workout. And then, my tummy was blowing up and it looked like I was pregnant. And in fact, so much so to where I think–I can’t remember if some of the neighbors in our street did hear that I was pregnant, and maybe didn’t know about the miscarriage, but it was like May, and I was having a huge Crohn’s–I didn’t know Crohn’s, but I was having something wrong with my body at the time. My tummy was huge and one of the neighbors was like, “Oh, yeah. Aren’t you due any month now? You sure look like it.” And I was like, “No. I had a fucking miscarriage and I don’t know what the fuck is wrong with my tummy right now.” So, it was like that bad.
And I remember talking to Jess and we’d both be like, “What’s going on?” She was working out. That wasn’t happening to her. Why is this happening to me? It was weird. And so, I had gone on birth control also that spring because trying to regulate my hormones and stuff from the miscarriage, seeing if that would help, and yeah. And so, I went to pick up my birth control at one point that summer, and I came home, and it was in the same little package. I didn’t read it or anything. I just started taking it. And then, I gained 15 pounds in two weeks and I had an ovarian cyst burst that put me in the hospital because it was a rupturing cyst, a hemorrhagic rupturing cyst that was a cyst filled with blood, and turns out that the pharmacy had given me the wrong birth control. They gave me an estrogen birth control and I didn’t read it. It was in the same little package. And I was on a progesterone only birth control. And so, literally, it made me gain 15 pounds in two weeks and gave me an ovarian cyst that put me in the hospital. That sucked. Then I was like, “There’s something wrong with my body.” This is the summer of 2015.
And that just progressively kept going for the whole next year. I was in and out of the hospital with–I was diagnosed with pleurisy three times because I was having all this chest pain. I had an indicator come in that they thought I had a blood clot in my lungs, so they rushed me to the ER. I had gone to like urgent care, and they’re like, “Oh, my god, this marker is showing you have a blood clot in your lung.” They’re like, “You need to go to the emergency room right away. They’re waiting for you. They’re expecting you.” I went in, they took me right back, I was terrified. I had like six ovarian cyst burst and rupture that year that put me in the ER as well. Like, I was just like so sick and it was constantly like in and out of the hospital. I was never admitted, but it was just–these really weird things going on with my body. And that happened for about a year.
And then, it was summer of 2016 that I went in to my OB-GYN’s office, and I was just bawling. I was like, “Something is wrong with me. I think it’s reproductive.” I can’t even drink water without pain. My tummy is huge. I’m having all these hormonal issues. I’m having all these cyst issues. My husband won’t touch me. It felt like my whole world is essentially crumbling down. I was like, “I’m so tired.” I mean, it was just seriously one thing after another. So, my OB-GYN, he was really wonderful and he was really supportive, and he’s like, “To me, this sounds digestive.” It feels like my butt hurts all the time, sex is painful, like everything hurts. And so, he was saying, “To me, it sounds like you have an issue from your mouth to the other end. So, I want to send you to gastroenterology and have them look at it. We need to consult.” And I was like, “Okay.”
So, he made a call and he’s like, “We’re going to get you in really soon.” It was like that next week that I was teaching Pilates and I was wearing flip-flops teaching, and teaching a math class. And one of my clients was like, “What’s wrong with your feet?” Because they were like black and blue. And I was like, “Oh, they just do that. I had poor circulation. And another client right next to her was like, “That is not normal for your age.” I would have been 27 at the time. And she’s like, “That’s not normal for your age.” She’s like, “I’m a DO, a doctor of an osteopathic physician.” And she’s like, “You should come see me.” And I was like, “Oh, okay.” She was like the first doctor. He was like, “Yeah, that’s not normal. What’s going on with your feet?” Other doctors were just like, “That’s poor circulation.”
So, I went to go see her and she started asking me a series of questions, all sorts of questions like my symptoms, which at this point, I had a multitude of symptoms. And she had asked me if I’d ever been bit by a tick. And I was like, “Oh, my god, yeah.” I just started laughing. I was like, “I couldn’t even tell you how many ticks I’ve been bit by.” Because my ex and I lived on a farm in 2006 in Kansas on 80 acres for a year. And in the summertime, especially if we were out there, like afterwards, we’d come inside and sit there and literally examine each other for ticks, and just pull ticks off each other. And so, I was like, “Yeah, totally.” And so, she was like, “Okay. Well, I’m going to send all these labs through.” And she’s like, “One of the tests I’m going to run is for Lyme disease,” and I was like, “Okay.” So, she set me up for bloodwork.
And then, I also had an appointment with the gastroenterologist at the time that was set and she’s like, “I’d like to be really aggressive and just go right away with a colonoscopy and see what’s going on. You are really young and this seems like it’s wrong.” That same time, I’d also been doing the autoimmune protocol diet, particularly led by Dr. Amy Myers. And I should have said that in 2015, I started following the autoimmune protocol diet because I was trying to figure out something that was wrong with me. I’d done the Whole30 twice. I had done the hormone balance diet by Dr. Sara Gottfried, which I also really loved that one. She’s got some great recipes and it did make me feel really good. So, I tried balancing my hormones, and then I got this book someone recommended it, the “AIP,” the Autoimmune Protocol, and I got that book and I filled up a little quiz in the beginning. And it was something like if you scored above, I don’t know, if you scored above 90 or something, you may have an autoimmune disease, and mine was like 187. And I was like, “Weird.” And I was reading the book and I thought I had like Hashimoto’s or something, endometriosis. So, when I was going into the colonoscopy, I 100% did not think I was going to have a gut disorder.
So, anyway, I went in for the colonoscopy. I was following the AIP diet super strict. I did it for two and a half years total completely strict. And then, in the same week of having a colonoscopy, they came out and said I was diagnosed with severe Crohn’s disease. I had 11 polyps that were removed and 5 came back pre-cancerous, which was pretty alarming because I was like 27 years old and like, “What the fuck, I have pre-cancerous polyps in my colon. That’s kind of scary.” The GI at the time was this diagnosis, what this means is that with you and I sitting in the room right now, you are 10 times more likely to die than I am. And I was like, “Okay. Cool.” I [00:18:19 unin] as a physician.
Chelsea: Thanks for that.
Cassie: Yeah. Thank you. I’m not scared enough already, right? So, the same week that I had that colonoscopy and had that diagnosis come back, my lab results had come back with my DO, and she told me that I had tested positive for Lyme disease, and also had hypothyroidism. My thyroid was really low. And I was like, “What the fuck! So, I got these two terrifying diagnoses in the same week.” And I remember calling my brother. I was really upset. My husband at the time was gone for all of that as well. He was working. So, I was on my own at home. I didn’t see him for several weeks after that, I believe, or a few days or something. But I called my brother at the time. I was really upset and scared. He’s very logical-minded, very scientific logical based, and he was like, “Well, the Lyme disease is a controversial topic and it’s not a real thing. So, that makes me question the other diagnoses that these doctors are giving you.” And I was like, “Controversial, what?” I was like, “Lyme disease is a completely fucking real thing. What are you talking about?” And I was like, “I have a camera at my ass. Of course, I have Crohn’s disease.” I was just, “What?”
It was kind of upsetting, but I realized that during that conversation, it made me be really quiet about my Lyme disease diagnosis ever since then for four years. And I’m really hoping that actually for a lot of the work that we’re doing that I talk more openly about it. I told my GI that I’d also have this Lyme disease diagnosis and I had started a treatment for it. I had already done dicyclomine, which is the antibiotic–no, sorry, doxycycline. Doxycycline is an antibiotic they usually prescribe to treat Lyme disease. And I had done doxycycline for two rounds that summer prior to my colonoscopy because, at one point, when I went to the hospital for an ovarian cyst rupturing, I was misdiagnosed by the doctor for having pelvic inflammatory disease, which he also said was like due to STDs, and I was like, “Oh, my god, is my husband cheating on me? Where would I get an STD from? What’s going on?” And then, he put me on doxycycline. And I was so sick I had to take off work. I couldn’t even leave my bed. It made me so sick. And like I said, then we got the Crohn’s diagnosis and my DO was like, “No wonder, the doxycycline made you so sick. You have severe crotch disease. Antibiotics like that would wreak havoc on your gut.”
So, to try and treat the Lyme then, we decided to take a more alternative route and do this super rigorous Chinese herbal treatment, which I did. It was disgusting the horrible stuff I had to drink. I can’t remember all the details. I did write about it though, so I have it somewhere in my documents. But I think I had to take this disgusting drink like three times a day, and then I started having what was called a herxing reaction, which is essentially where it’s like what they say, the parasite of the Lyme begins to stir up in your body and wants to like–it becomes more alive as you’re trying to kill it off and you have to get through so you’ll feel more sick. That started happening.
And then, that fall of 2016, I stayed on the AIP diet, I tried a bunch of different alternative medical treatments from ozone therapy to hydrogen peroxide therapy, to ozone enemas, to this Chinese herbal stuff, to different diets, to vitamin B shots, to vitamin C infusions, like I tried all the shit. And we’ll do another episode about treatments, I think, one time with some more research done behind it. So, then I still wasn’t improving. So, around February of 2017, it’s about six months after my diagnosis, but obviously, now, you’ve heard I was sick for several years, I wasn’t having improvements, and my doctor, my GI–I switched GIs because my one was insane. And so, I got a new GI and I did like him and trusted him in Missoula. And he’s like, “We need to try these immune suppressants, a biologic drug.” So, I started on Remicade, which is an IV infusion, and I was starting it on every eight weeks, and it’s classified as a chemotherapy drug, and it was [00:22:57 unin]. So, I started that in February. And in May, I had what I thought was another ovarian cyst rupturing, so I didn’t go to the hospital. And after a week, I was like–
Chelsea: Why didn’t you go to the hospital?
Cassie: Because I had been to the hospital so many times for this ovarian cyst rupturing and there’s nothing they can do. Half the time, they don’t even give you pain meds because they think you’re there trying to get hooked on it. And unless it’s like hemorrhagic and a certain size, they won’t operate or treat anything. They’re just like, “Basically, if it doesn’t go away or gets worse, call us.” So, I had stopped going. I think I’ve had like three, during that time, ovarian cyst rupturing. I didn’t go to the ER. So, in May of 2017, I was just like, “Man, this is a really bad one, you know.” And I didn’t go in and I remember it was that night that I felt as though it had ruptured and I couldn’t move. And I remember that night, I wasn’t getting better normally. The pain would be better within a few hours and it wasn’t. And I remember my husband being like–because I was like, “I think I need to go to the ER.” And he’s like, “Well, how bad is the pain on a scale of 0 to 10?” And I was like, “Ten.” And he’s like, “You’re telling me that this is the worst pain you’ve had in your life?” And I was like, “Yes, I’m telling you that this is the worst pain I’ve ever had in my life.”
I think I was like, “If it doesn’t get any better within an hour, we’re going.” And I remember it got like mildly better/I also think I somewhat passed out and fell asleep because I was so exhausted from the pain. And then, a week later, and that whole week is like a blur to me. I don’t even know how I got through it. I do remember taking off work. I just remember not feeling well. It’s kind of a blur, but a whole week later, I was crippled over in pain, doubled over, could not stand up, could hardly even speak. And my sister-in-law, my husband’s little sister, she was like, “I’m scared. I’m taking you to the ER.” And I was finally like, “Okay. I agree to go.” And I couldn’t even try. She didn’t even have her driver’s license and she drove me and Shannon, to the hospital because again, he wasn’t there, it was just us.
And they did an internal sonogram, they didn’t see a cyst, and I was like, “Well, that’s bizarre.” And so, they did a CT and they said I had a small bowel obstruction, and I was like, “Oh, shit.” And they admitted me in, and I had to have an NG tube up my nose that was pumping out my stomach that was unbelievably painful when they put that in. And I was admitted for five nights and it sucked, and they wanted to do a bowel resection, they wanted to take part of my colon. My DO at the time was just like, “Don’t do it right away. Just give it time, give it time.” I was on IV steroids, oral steroids, the Remicade, all this stuff. And she was like, “Just give it time, give it time,” and I’m so glad that she really fought hard with that for me because I ended up not getting the surgery and was able to save part of my colon.
But that summer of 2017, I ended up coming to Kansas for the summer with my son to recoup and have family around because I was really weak, I couldn’t eat anything but bone broth and baby rice cereal for like a month. It was a super rough time and I was really grateful for coming to Kansas that summer to kind of recoup. And I began to realize also that summer that I felt like my marriage was maybe over. I felt very alone in the process and my stress levels were really high. I also found out that I was having like three to six panic attacks a day. At the time, I had no idea that that was happening. I didn’t know what was wrong with me, but we came to Kansas. I started recouping and didn’t have stress and responsibility. It was just my son and I, and these weird feelings that I was having every day had gone away, and couldn’t feel my hands, heart racing, thinking I was going to pass out, ringing in my ears, all this stuff. And it was then that I was talking to my therapist and they’re like, “Those are panic attacks.” And I was like, “No, because it happens like six times a day.” And she’s like, “Huh, you’re having panic attacks like six times a day. This is not good.” And I was like, “Oh, shit. This is not good.”
So, it was August of 2017 that I went back to Montana. I drove back to Montana with my son and our dogs, and I saw my DO at the time who I really trusted. Shout out to Dr. Pacheco in Missoula. And Dr. Pacheco actually, for any of those listening and if there is any controversy with the Lyme stuff, she actually was one of the doctors in Maine who specialized in Lyme. She was a freaking badass. She’s still around. She is a badass. And I remember seeing another doctor in 2017 who was dismissive of the Lyme diagnosis and I was starting to question it because it was in the back of my mind anyway. And she did another test, just a regular like because the first one she sent to a lab in Maine, and then this one she just did a lab test through the hospital in Missoula and it came back positive, too. And I was like, “Okay. Well, there’s two positive blood tests for Lyme at two different hospitals on complete opposite ends of the country. Obviously, there’s something to this.” But again, I still don’t really talk about it.
So, I know I’m talking really fast, but I’m trying to put it all out there. Someone can pause or fast forward or whatever. So, I went back in August of 2017, and I talked to her, and I was like, “I think I’m having panic attacks. I’m not sleeping also. I’m in so much pain, like I’m worn out, everything, my body has just gone through so much. I feel like I can’t eat hardly anything. I can’t tolerate anything.” So, she decided to put me on an antidepressant called trazodone, and I started with a really low dose, the lowest dose you can, and it helps you sleep at night. And she’s like, “I feel like if you just could have a good quality of sleep at night that you would feel so much better.” And that’s totally what happened. I started actually sleeping at night and I felt so much better the next day. So, the antidepressant, I was on the lowest dose you can be, but it was helping me sleep, and that was making a world of difference for me.
And two months later by October 2017, my husband and I separated at the time. And so, that was a whole bunch of stress, and I was real glad that I started the antidepressant just before that. And then, I was sick again in like February 2018. They did another colonoscopy. And then, August of 2018, moved to Kansas, and I had been doing actually pretty good that summer, but we moved here that fall. I was really sick again and sick through the winter. So, they went ahead and switched me to Stelara, which is a different biologic in February or March of last year 2019. And then, again, I had like a really good first six months on it, and then it stopped working around September of 2019. I talked about it on a different podcast episode. I was in New Orleans with Jessica and my other girlfriends, and I was so sick. I basically spent five days in the Airbnb down there. And I progressively got worse through the winter, which led up to this year, had another colonoscopy. I had four colonoscopies in three and a half years.
And now, where we are now is I’m facing surgery September 11th for a fistula. I’m going to have rectal surgery down there, too, for my Crohn’s. And we’re going to be switching me to Entyvio because now the Stelara is not managing my Crohn’s. So, the only other thing I want to add on there, I guess, is just like I’ve had a multitude of symptoms, I’ve had a lot of reproductive issues. My GI–or I’m sorry, my OB-GYN in Montana definitely thought I’ve had endometriosis because of the amount of issues I’ve had. And he said that if I ever have to get surgery for Crohn’s, that he wants to take a look there to check for endometriosis. And yeah. And then, I’ve had a lot of joint pain, a lot of nausea, a lot of migraines, tons of fatigue, chest pain, every GI symptom under the sun, I think one could say. And so, yeah. I mean, that’s everything. I didn’t intend to talk for like 30 minutes the way that I just did, but it’s a lot.
Chelsea: There’s a lot of pieces to the story.
Cassie: There’s a lot of pieces to it. I definitely want to say that stress, I think, has been a huge factor contributing to my illness. I think I pushed that to the wayside a lot over these last four years, five years, because I’m very strong mentally and strong-willed. And so, I’ll always be like, “No. I’m fine.” But actually, the stress is taking a physical toll on me. And so, yeah. I definitely have realized stress is a big factor, and yeah. So, that’s why I had to add some of those life events in because they are actually really relevant because my disease got worse every time I had one of these big stressful life events.
Chelsea: Yeah. So, it was funny when you were talking about like when you moved to Kansas and when you switched from Remicade to Stelara because while we’ve been working closely together, you’ve been on Stelara.
Chelsea: But I do remember like when you first moved here communicating like, “Hey, I have my Remicade infusion. I can’t work these next few days. I need help getting my classes covered.” And so, when you started talking about that, I had this weird flashback of like, “Oh, yeah.” And it was weird because it took me back to when I first met you and you were fun, and I enjoyed talking to you, and I’m like, “I knew you had Crohn’s, but I didn’t like knowing the way that I know you now.” Oh, my goodness, like, yeah. That was Cassie to me at that time before we got really close and we worked together a lot.
Cassie: Yeah. I’m glad that you brought that up, yeah, because also, when I was on Remicade, it definitely helped take my disease out of crisis mode, but I had a real hard time on it. I mean, I had like a lot of side effects. I had to take off at least a week of work after every infusion, which was every eight weeks, then they bumped me up to every six weeks. So, every six weeks, I had to take off an entire week from work. And then, I had rashes where they thought I had shingles at one point, mono reactivated in my system twice when I was on Remicade, and then ones on Stelara. So, that put me out. Actually, every winter, that happens. It mono reactivates in my body. Hopefully, that doesn’t happen this winter when I start Entyvio because that’s a little pattern that I’ve had happen. And I lost a lot of hair when I was on Remicade. My skin was different, like my entire body reacted differently than I’d ever known it. My skin was really dull. I used to have kind of a healthy glow a little bit about me, even when I was sick, and Remicade took that away. It was just really interesting. I always have had like thick hair and strong nails, and I didn’t have that with Remicade.
On Stelara, overall, it’s been definitely better than Remicade, but obviously, it’s not treating my disease. I don’t remember if we talked about this on our earlier podcast, but I had a headache and migraines for something like seven weeks straight this year, which we thought was side effects from Stelara. And then, they actually ended up switching my antidepressant to amitriptyline, which is also prescribed by neurologists for headaches. And then, that helps my migraines and headaches. So, it’s kind of an interesting road. And yeah, I guess I just really–my heart goes out to those who do live with chronic illness, and I feel as though I’ve tried a lot of alternative therapies, and I’ve also tried a lot of the western medicines and chemicals and drugs. I think that finding a happy balance between the two is really important. I’m really hoping that the next few things I have coming up with my health are the puzzle pieces that I’ve been missing in my health journey because I really haven’t gone symptom-free for more than like a few days or a week tops in five to seven years. And it would be really nice to experience that. Yeah.
Chelsea: So, one last thing, and who knows this will actually be the last thing you’re going to keep talking because it’s us, but we talked about self-care and prioritizing self-care and there’s things that you need to do to take care of yourself. So, what are the things that you found work really well for you that help you feel your best, or if you’re like, “I have to pick between Option A or Option B,” like, what are those top things that you’re like, “This is a non-negotiable, I have to make sure that I make time for this, I set aside time for this?” What are those things in your life that help you feel as good as you can?
Cassie: Freak, that’s a good question, man. You’re such a good interviewer.
Chelsea: I’m trying. I’ve had a lot of practice the past couple months.
Cassie: I know, right. Yeah. That’s a really good question. So, I definitely want to start by saying I did pretty much no self-care for the first two years. And I talked about this. I actually think on our interview with Dr. Kelsey Klausmeyer, Obesity Is Not What You Think, is the episode with him where I saw an acupuncturist in Missoula. This would have been spring of 2017. So, just around the time of a small bowel obstruction there is falling apart and such. And I remember her saying like, “You need some joy in your life, you need delight, you need pleasure.” And at the time, all I can think of with making my bedroom serene and having–I was like, “You know what, my Himalayan salt lamp really makes me feel good. I like the light that it puts off. It makes me feel calm. And like reading ‘Outlander.'”
Chelsea: I love “Outlander.” How have we not talked about this before? Have we talked about this?
Cassie: I don’t know, but I’m not surprised because we like so much of the same stuff. And so, yeah. So, I was just like, “I need these nice things and quietness and peace.” I found that that’s at the time what I needed. So, I started implementing that. And then, I worked on that for most of 2017 just finding little things that brought me just the smallest sense of peace, like essential oils, nice lighting, freaking soft blankets. I didn’t really have a lot of money and it was just those. And then, that also is when I started connecting with people on Instagram. I was like, “Oh, my god, there’s other people with Crohn’s disease out there in the world. What?” And that brought me like a little sense of joy and peace and connection with Instagram.
And then, after my husband and I separated, and then 2018 in January, my son and I moved into an apartment just the two of us. And then, I was like, “Fucking let freedom ring. I am a woman, and I am my own woman, and I can do whatever I want, and I’m free, and I got to take care of me and my son, and this is it. This is life. This is everything I wanted.” And I decorated my own space and that brought me like a huge amount of peace even though it was like a one-bedroom apartment. We were sharing a bedroom, tiny. And I started going out with my girlfriends every now and then and having drinks and dancing, dancing for hours on the dance floor. And let me tell you, I would be in so much fucking pain and somehow squeezing into a pair of jeans, and I would go out, and I would have a few shots of tequila, which I knew were going to hurt my stomach and make me sick the next day, but the dancing with my girlfriend and letting loose, that honestly was some of the best therapy I could have had and was worth every minute of bleeding out of my asshole the next day.
I mean, not to be like TMI, but that was one of the things of like I am sacrificing how I feel tomorrow for tonight, but I needed that joy, I needed that sense of freedom, I needed that empowerment, I needed to know that I was still not this body riddled with sickness. When one goes through a separation, especially I think in a marriage, in a long-term marriage that we had had, you go through a sense of identity crisis. You were a wife or you were part of a two and you’re not. So, then 2018, I went out quite a bit with my girlfriends, and had a few margaritas, and would dance my little tail off all night, and that was really important self-care at the time. Now, that is totally not on my priority list. I absolutely 100% cannot do that anymore. But you know what, for six months, it was great shit. And I had some really super enjoyable sex that year with a couple people, and that was really great self-care that I actually really needed. I needed to know that my body was capable of experiencing pleasure when I’ve been sick and in pain so badly for so many years. So, I would say that was kind of like some self-care. And then, it was things like my ex really hated TV, especially reality TV to my apartment. My son would go to bed and I’d be like, I’m watching four hours of America’s Next Top Model, and that’s what I’m going to do, and it makes me happy, and it makes me feel good.
Chelsea: But no one can stop me.
Cassie: No one can stop me. And it was like, when we lived in our house together, I was always freezing in the wintertime and I cranked the fucking heat in my apartment. And so, honestly, some of the self-care for me was just being able to be in control of these little funny things. And then, in the last two years living in Kansas, I would say that watching, just having time to myself when my son’s gone to bed, reading, meditation, quiet, peace. We live in such a chaotic world and I am very extroverted, and I like background noise, and I like things that–so sometimes I really need to chill the fuck out and have peace and quiet and, yeah, meditate, read books, listening to music. I love to just go for a drive and listen to music, or just like sit in my room and lay in my bed and just listen to music like really loud.
And then, little things like painting my nails each week and just really enjoying it, or my son and I would go do treats together. I would just sometimes be like, “You know what, I just want to go and spend money with him.” I just want to go and treat ourselves, and we would go and get drinks, and then pastries, and then I’d go buy him an action figure, and then I’d be like, “Let’s go to the movies.” And we’d go to the movies, and then we’d pick up dinner on the way home. I just needed treats and spoiling the two of us. And I do think that comes partially from living with a chronic illness is you do spend so much of your life not feeling good and it’s sometimes really hard to remember the little things. But one of the things that I think living with a chronic illness gives you is like immense joy and pleasure in just the little things, like how good it feels sometimes to go to Target and just buy a few things, or go to the movies and feel well enough to sit there. I take my hot water bottle to the movie theater. I don’t give an F. And so, that I can comfortably sit there and enjoy the movie.
And gosh, I remember my son and I went to three movies in a week one time. So, I know that’s kind of a long-winded question. Oh, I do want to add in there, too, that Pilates was definitely self-care for me, prioritizing time to work out and do Pilates. It does relieve a lot of joint pain for me, it makes me feel strong and gives me endorphins. And I can always tell when I’m not making it a priority, my body hurts more, I feel a little bit more depressed, which I’m doing right now these days. And so, Pilates was definitely self-care. And then, I did go to one of your talks, Chelsea, months and months ago, and you talked about how doing your laundry can be a form of self-care, and meal prepping is a form of self-care because you’re setting yourself up for that week ahead, and that really helps shift my mindset. And actually, yesterday, I put my laundry away while I was watching Hulu. And in my mind, I was like, instead of seeing it as a chore, I was like, “This feels really nice to take care of putting my laundry away because now, I don’t have to worry about doing my laundry or whatever.” So, that was a lot to answer your question, but–
Chelsea: Oh, I think it was good that you went through the things that you did when you were first starting to take care of yourself and what you do now, because I think that that is a big part of your story, and I hope that–I mean, people listening are on all sorts of sides of the spectrum. There’s some people that are like, “Yeah. I still don’t know what’s wrong. I’m still in the shit hole, everything sucks.” They’re like, “Yeah. My disease is pretty well-controlled.” It’s still there, but I can live a pretty full life. I feel pretty good most of the time. So, I think that you talking through where you were at, what you did, and how it maybe has changed a little bit and what you prioritize now, I think that’s good examples. And everyone listening, self-care is individual to everyone. Recently, I’ve been like, “Whatever Cassie said sounds like not fun at all.” Well, that’s her self-care, not your self-care.
Cassie: Yeah. And I think that’s part of why I wanted to share all that, too, is it does change and evolve, and you can make anything into self-care in a sense. I did realize, like I said, years, two years ago that I was like, “Man, you know what, enjoying sex and having pleasure is a form of self-care right now. I’m doing it for me.” And that was one of the first times in my life actually that I was really doing it for me and taking the guilt out or shame out of it and just being like, “This is fun.” Whereas right now, with the issues I have going on down there, that is the last fucking thing on my mind, let me tell you. That is like a hell no, I want nothing to do with sex right now at all. So, just for those listening, it’s like I totally also understand that sometimes absolutely not, that wouldn’t be on the list. And I’m there, too. And I’ve been there multiple times in my life.
And actually, I’m glad to share that, too, with us having done our sex and intimacy and a chronic illness months ago when I was still feeling spicy and enjoying it. I think it’s important for people to hear that it’s like, also we go through times in our life that–that episode doesn’t resonate with me at all right now, and I want to be able to share that because there’s going to be people that listen to it and it might have felt the same for them, too. And if you haven’t listened to it, you should listen to it because it’s a really good episode. Even though it doesn’t resonate with me right now, it’s great shit.
Chelsea: Well, Cassie, I’m really glad we got to talk about your story because you’ve gotten it like bits and pieces for a while, but now we get to actually share specifically what you went through. Is there anything else you want to share before we end today’s little chat?
Cassie: I think that all I would just be left to say is I am really open and I really, if any of you want to talk, freaking DM us. I know that we say that in every episode, but we really mean it.
Chelsea: We actually respond.
Cassie: Yeah, we actually respond.
Chelsea: We did actually respond. And it is us.
Cassie: Yeah, we get in there.
Chelsea: It’s not someone else, it’s one of us. It might be hard to tell which one is which, but you’re getting one of us, I promise.
Cassie: Yeah, totally. I know. Sometimes we’ll say who you’re talking to, but not always. And so, if you are, wherever you’re at in your illness or diagnosis process, if you are just wanting connection, we’re here. And as I said, it was years ago that I started connecting on Instagram and it did a lot for my mental health. And I know that there’s times that it’s like one should say shut off from social media for your mental health, but I do want to be able to say that there were times that Instagram has saved my mental health from that connection. And so, we’re there for you. That’d be it. Thanks, Chelsea. I’m really glad that we did this episode. It’s funny that it took us like six months to actually do it.
Chelsea: I know. I’m glad we didn’t–
Cassie: We didn’t think about it.
Chelsea: I don’t know why we didn’t think about it, but it’s happening, we did it. Yay.