Lauren Reimer is a blogger, content creator, and chronic illness community leader based in Fayetteville, Arkansas. At the age of 13, she was diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO), which means that her digestive tract acts as though it is obstructed — even when it is not. Lacking peristalsis, the worm-like movement that moves food, fluid, and air through her digestive tract, her body is unable to absorb adequate amounts of nutrients from eating alone. As such, she relies on IV nutrition (total parenteral nutrition, or TPN), administered from a 2.5-liter bag of fluid containing fats, protein, sugars, vitamins, and minerals that infuses over 12 hours while she sleeps. She’s been living on this therapy since her diagnosis, and while unusual, it has sustained her and allowed her to live a full life. She also has two feedings tubes that she uses to decompress her stomach and intestine during her waking hours. What sets Lauren apart in her work is her boldness and color: this woman loves all things vintage, fashion, music, and art, and when not in COVID quarantine she loves to spend time with her friends (and there are many!). A frequent guest on her social media feed is her sweet dog Elway, a rescue who keeps her spirits high and her body active (when he’s not napping). Friends of UP: meet Lauren of Pretty Couch Potato!
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Tune in as Lauren shares:
- how she was first diagnosed
- what CIPO is, and how it affects her body
- why she’s permanently on TPN — and how her understanding of nutrition has changed over time and with experience
- how her experiments with holistic medicine failed her
- that while she doesn’t live with chronic pain, she is in chronic discomfort
- that she now has both a G-tube and a J-tube to assist in her digestion, as well as a central line for absorbing her TPN
- just how rare CIPO is
- how she has become her own advocate
- how chronic illness has directly impacted her education and career prospects
- that she is now able to work part-time remotely, matching TPN patients with the best care for them
- why she loves her work, which overlaps with advocacy
- that there is a lot of misinformation out there about TPN
- that TPN is not often or readily prescribed (about 40k/year in the US are prescribed it) — and many individuals prescribed the treatment are given it short-term in the NICU or in hospice — very few people live long-term on TPN, like Lauren does
- that she may explore multiple-organ transplant options in the future
- what eating is like for her, given that she gets no nutrition from food
- the misunderstanding that people living with disabilities aren’t willing to fully participate in life — and how she actively works to challenge that misconception
- why her big-city vs. small-town healthcare experiences have been so vastly different
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Lauren: Okay guys, I am here with Lauren Reimer. She is also known as PrettyCouchPotato. You might know her from social media, and she’s here to talk to us about living with chronic illness. She herself lives with chronic illness, and she’s also a chronic illness community connector, which she’s going to tell us all about. So Lauren, thank you so much for joining us on the show.
Lauren Reimer: Thank you for having me. I’m so excited!
Lauren: I know, me too! We’ve been texting for a while and sending emails. It’s finally happened. And it’s like, “Oh, hey, you’re my old friend. I know you well.”
Lauren Reimer: Yes, now we can see each other’s faces in real time. Here we are.
Lauren: Exactly. So let’s start from the very beginning. Let’s like go back to basics. When and how did you first realize you had something going on?
Lauren Reimer: So, I’ve been ill since I was about four years old. I don’t really have distinct memories of that.
I just remember my belly hurting a lot.
I am from the panhandle of Texas, where it’s super small town. I went to my doctor that delivered me as a baby, the doctor of the town. They didn’t really know what was going on. It didn’t seem like anything crazy. Whenever it was onsetting, it was not, like, kabam, everything’s terrible. It was kind of a gradual development situation.
Lauren: It was mostly tummy aches and pain and digestive issues.
Lauren Reimer: Yeah. And I hadn’t experienced anything as a baby. So it was a new thing. It wasn’t like it had been happening since birth or anything. So it was a new situation. But as things started to progress … I had an aunt who lived in the Dallas area and I remember going to the Children’s Hospital there for some testing. I couldn’t tell you what those tests were. Maybe my mom or dad could. I don’t know, I kind of blocked that.
Lauren: Also, when you’re really young, how do you absorb the science of all it?
Lauren Reimer: Exactly. And so we went on that trip. And, of course, I don’t remember anything, but basically up until about 13 years old, it was, like, it’s all in her head. From the ages of 4-ish, 5-ish to about 7, 8 probably, I had four really close people to me die, tragically. My grandma died, my grandpa died. My uncle died. And my second grade teacher all died — in a span of a couple of years. My second grade teacher while I was in her class, our teacher died. In a car wreck.
Lauren: Oh, yeah, that’s very traumatic.
Lauren Reimer: So, like, yeah, doctors, maybe.
But there were a lot of telltale signs that it was not just an anxious stomach.
Lauren: But it sounds like they were writing it off as … okay, she’s experienced a lot of trauma. She’s under a lot of duress. This little girl is stressed out, and that’s why she’s having a bellyache.
Lauren Reimer: Right. And what’s funny is like, now in 2019, we would expect that those doctors, had that been the case, would have hooked me up with some sort of therapy situation?
Lauren: Yeah, at the very least. But also the thing is that sometimes in small towns, for example, right, there’s not always access to mental health care. And also when we were growing up, it was not the kind of thing you really talked about. It wasn’t until the late ‘90s that it became cool to talk about mental health care — because Kurt Cobain died. You know what I mean?
Lauren Reimer: Right. Well, and it’s funny, because I’ll be 27 in a little bit. And, it was in the ‘90s. But in a Southern small town. So yeah, probably in the big cities in New York, California, it would probably …
Lauren: Even then, when I think about the mental health thing … I’ve been going to therapy for years and years. When did I actually tell my friends that I went to therapy? Probably not until I was in my late 20s, right. And then, I was, like, “And by the way, I’ve been going for 20 years!” I think it’s become a more acceptable conversation, but it’s certainly not something that was openly discussed when we were kids, when we were growing up. And it’s not something that doctors really thought to prescribe necessarily, unless they were already connected to a mental health network, which required being in a town with a big hospital and things like that. So if you didn’t have the access, you didn’t have the access.
Lauren Reimer: Right, which is super funny, because I’m in Arkansas, where the University of Arkansas is. So it’s not a small town. But I went to my PCP appointment this morning, and she’s, like, “Do you want to hook up with any mental health situation?” And so it happened, it is happening, which is amazing.
Lauren: There’s been a sea change for sure. I mean, it can always be improved. But it’s beginning to improve, which is great news. Okay, so when did you actually get diagnosed? When did the doctor start taking you seriously? And how did that all go down?
Lauren Reimer: So on top of the ‘all in your head’ talk …
Lauren: Yeah, this is a story we’ve heard before, especially among women.
Lauren Reimer: So many, so many times. It was also that I ate too much cheese. I did all these practice diets; none of them worked. It’s super weird because they did tons of barium swallows … let’s watch how things digest, let’s do this … Stuff was hanging out in my stomach for hours and hours and hours, and they’d be, like, “Okay, we’re closing. It hasn’t gone anywhere. Bye.” But there was no one saying, “Oh, this is weird.” Until someone was, like, “Hey, let’s get in there and take a look at the actual organ and see what’s happening.” So this was when I was 13 years old; I went in and had a full thickness biopsy of my small bowel. And that’s when they diagnosed me with chronic intestinal pseudo-obstruction (CIPO), which basically means the muscles in my intestine just aren’t doing their job. They’re not doing the worm-like movement to move food through; the Paracelsus isn’t there. And they’re also super-dilated, and then in some areas they’re super narrowed.
There’s lots of scarring and weird stuff going on in there.
And so they were, like, “Oh, this is a problem.”
Lauren: Why do they call it pseudo-obstruction, and not just obstruction?
Lauren Reimer: So an obstruction would be if your intestine was actually twisted or if you had a blockage of something like a tumor; that would be considered an obstruction. It’d be a mechanical obstruction. But I’ve never actually had a volvulus or a twist or blockage or anything. But my guts act as if they are obstructed; they just don’t go. They are still always super-dilated, no matter what. So that’s when the diagnosis happened. And it was nice to have a name to the chaos, for the thing that was causing the chaos. We had a name for it.
Lauren: Yeah. And then when you have a name, you can begin to treat, right.
Lauren Reimer: Well, mine isn’t really treatable. It’s a manageable situation. So, at this point, I’m 13 years old and I weigh about 65 pounds. Which is really small for a 13-year-old human who’s supposed to be growing.
Lauren: So there are signs of malnutrition at the very least.
Lauren Reimer: Yeah, absolutely. My belly always looked like I was 1000 years pregnant, with 400 children. And my arms were super thin and my legs, everything but my belly was just like sticks. So definitely malnutrition. And I was going to the hospital a lot, because I would throw up pretty much everything. Because I was so full of stuff that wasn’t moving anywhere, so there was nowhere for it to go. I was throwing up pretty much every day, and when you throw up, your electrolytes get whacked, you’re dehydrated … you know, all those things … and I would end up in the hospital. And my hands and feet would be doing this claw-like thing; they never really did give us an explanation of why that happens. Just with dehydration, I guess, I don’t know. They would just pretty much give me some fluids and be, like, “All right, you’re good. Bye!”
Lauren: And not, like, “Let’s treat the actual long-term condition here.”
Lauren Reimer: Or, “Let’s look at what’s happening.”
Lauren: Amazing, isn’t it.
Lauren Reimer: I mean, ERs.
Lauren: That’s not what they’re designed for.
Lauren Reimer: But, you say, “It’s time to treat.”
Pseudo-obstruction, there’s no cure. There’s no “This is exactly what we’re going to do. And this is going to work for everybody.”
I had to have nutrition; I was so nutritionally depleted that there was no question. I can’t remember the timeline … I’ve written this out, and my dad knows, but my brain can’t hold all of the dates and all of the months and years … but it wasn’t too long after this diagnosis that I ended up admitted at Children’s (Medical Center) in Dallas, and they started TPN — which is total parenteral nutrition.
Lauren: Explain to our listeners what that looks like? And you’re still on this treatment?
Lauren Reimer: I am. TPN is total parenteral nutrition. Some will call it HPN, for home parenteral nutrition. It’s not “parental”, it’s parenteral! And it is IV nutrition. It’s bypassing the digestive tract and goes straight into a major vein and it’s broken down for your body to just accept the nutrition.
Lauren: Now, does this mean that you’re eating solid foods as well and then having this as sort of a complement?
Lauren Reimer: At that point, yes. I was still eating.
Lauren: And you were about 13?
Lauren Reimer: Yes. I was 13 when I started, so I was eating food and doing the TPN supplemental. At this point, I didn’t know that people went home and did NPO, which is ‘no food by mouth’. That wasn’t a thing that I knew. And also you have to remember, I’m almost 27, and for listeners out there who have been on social media since their health situation began … when was this, 2005, 2006 … that’s when Facebook maybe just began, and probably was just for college students at that point. I think that sounds right? So social media was not a thing really. You would go on weird forums which … I was young and that wasn’t really a safe place for me to be so I didn’t really do that.
But just as a side note, when I talk about not knowing things, it’s because it wasn’t readily available to me on Instagram like it is now.
It’s wild to me how many people know what TPN is when they’ve never been on that therapy, in this online community. It blows my mind because before this, people didn’t know that existed.
Lauren: Basically, you were still eating solid food then?
Lauren Reimer: Yes. Right.
Lauren: So what does it look like now? You’re still on TPN now?
Lauren Reimer: I am. Everyone goes on TPN expecting to come off. Whether or not that happens, it just depends on how things go. Not everyone goes on, expecting to get off; I take that back. Some people know from the get-go that it’s a lifelong thing. I did not. But for the first few months, I was on seven days a week. It’s a huge bag of fluid that runs overnight, or during the day.
Lauren: So when it’s running overnight or during the day, and you’re saying it goes in a major vein, does that mean you’re stabilizing an arm so that it goes in?
Lauren Reimer: No, I have a central line, so my central line is in my chest. Not a typical IV that you’d picture in the hospital. It’s more of a permanent line. Most people are most familiar with ports. Mine doesn’t access and de-access with a needle like a port does; mine is always accessed. I have a Hickman catheter. That’s a tunneled catheter that’s in my chest.
Lauren: So does that mean you’re also carrying a bag around with you all the time?
Lauren Reimer: Not all the time. I’ve always only infused at nighttime. Because my body tolerates that. Some people’s don’t.
So I would infuse overnight, and for the first few months it was every day.
And then it started becoming this pattern, where I’d go to the doctor, and they’d be, like, “Great, you’re doing amazing. Let’s knock a day off.” We would play this game. And I was down to three days a week for several years, with supplemental hydration if I needed it. I was doing okay. My belly still hurt all the time. And I would still throw up and end up in the hospital. All this stuff. It didn’t really change. But I had nutrition, and I had gained weight, which was great.
Lauren: So you weren’t visibly sick at that point?
Lauren Reimer: I mean, my belly still looked really big. But for the most part, doing pretty well. And then, when I was about 20 years old … TPN affects the liver and they don’t super know why. The most suspected is the fat content that we get intravenously. The liver doesn’t love that. Well, it hates that the most. But just not metabolizing food normally; your body’s just, like, ‘why are we doing this, so I’m going to freak out a little bit.’ So my doctor was, like, “Hey, you’re doing pretty well. You want to see how you do without TPN?” At this point, I’m down to three days; I’m, like, heck, yeah. I am ready to be done with you, that, this and everything. Get me out of here. So I’m, like, yeah! And so for the next year, I was off TPN. Basically, my doctor sent me home and was, like, “Just try and eat as many high-calorie, low-fat low-fiber foods as you possibly can.” What does that mean? I know ice cream has a lot of fat in it …
Lauren: But it’s also got sugar!
Lauren Reimer: And it’s super melty in your guts. And a lot of Kit Kats; Kit Kats are very high-calorie.
Lauren: Surprise, surprise!
Lauren Reimer: And so basically, that’s what I did.
And things went downhill pretty quickly.
Lauren: Do you think that’s because they didn’t give you proper nutrition counseling, at that point? They’re telling you, here’s the kinds of foods you should eat. But they’re not sitting down with you, or setting you up with a nutritionist to be, like, “Let’s create a plan for you.”
Lauren Reimer: Maybe. And also the fact that my body cannot sustain itself. It just can’t.
Lauren: So this is what you discovered going off TPN?
Lauren Reimer: Yes. And my doctor was doing this as an experiment. But my doctor also isn’t my mom, and can’t call me and be, like, “Hey, you need to come in to see me now.” Because she (my doctor) is not managing anything at this point. I was 20 and ready to never see her again. It wasn’t because I didn’t like her!
Lauren: You were young and you wanted to have a life!
Lauren Reimer: Yes, so that went really bad. I also ended up hearing that a group of very naturo-pathy people were going to heal me. They decided that I actually had parasites and were telling me all this stuff — that I believed at the time. And they put me on the opposite diet, which was no sugar, no carbs, all fat, all fiber.
Lauren: And was that something that was recommended by your doctor, or just something you decided to explore?
Lauren Reimer: Lord, no. She would have lost her mind if she found out. Well, she did find out eventually. But yeah, they were, like, “We’re gonna heal you, and the way to kill parasites is by starving them.”
Well, I didn’t have parasites.
I had a pathology report saying that my muscles did not work.
Lauren: But at that point, it sounds like you were sort of young and slightly naive, and willing to try anything.
Lauren Reimer: Exactly. And you know, you use the word “heal” at me …
Lauren: … and it like sounds like magic!
Lauren Reimer: It’s magical!
Lauren: This is the thing with chronic conditions, right? The word “chronic” exists because you may be able to manage the symptoms, but it doesn’t mean that you’ll ever necessarily be able to heal the condition.
Lauren Reimer: Exactly.
A thing that I like to say to people is: At first it’s chaos, but then it turns into self-care.
And that’s what I didn’t realize at the time. So anyway, I hung out, off TPN for about nine months. It was terrible. I decided I was going to fly out to California to stay with my aunt for a while because I just wanted to … I don’t know … I mean, I knew it wasn’t going well, but I wouldn’t weigh myself, I wouldn’t do any of the things that I should have done.
Lauren: Well, as a young woman, too, this has got to give you a pretty dysfunctional relationship with food in general, right. In a world where we’re already taught to have a dysfunctional relationship with our bodies, your body is in dysfunction with you, right? So you’re already receiving all these signals and stimuli that are telling you that everything about you is broken. But legitimately, something inside you isn’t working the way it’s supposed to, and that must have been hard to accept.
Lauren Reimer: Yes. Because I do hear a lot of people’s stories … like, they kind of go through this rebellious phase, more towards the beginning of getting diagnosed. But I had to become an adult to be, like, yeah, screw this! This doesn’t have to exist!
Lauren: So that came later, because you’d been sick since you were younger.
Lauren Reimer: Seven years later, yeah. And also, I had to drop out of college. I moved cross country to Oregon to go to college, and had to leave there. Nothing, no jobs were working out.
It was really devastating at the time to figure out what my life was going to be like.
Anyway, I went to California. I flew in to stay with a friend; my aunt was gonna come get me a couple days later. But I called her that next morning and I said, “Aunt Judy, we have to go to hospital now. This is not okay.” Also, those naturopath people were emailing back and forth, and I was, like, “Something isn’t right. I can’t even get myself out of bed.” And they were, like, “Well, things get worse before they get better. But if you think you need medical attention … blah, blah, blah.”
Lauren: Well, it sounds like those people didn’t serve you, right, because they didn’t even acknowledge the fact that the condition you had existed.
Lauren Reimer: Exactly, and like in a weird way that we’re not used to in the normal Western medicine world.
Lauren: It’s great that you explored other options that were available to you. Even if you found out that they weren’t the right ones for you, at least you tried them.
Lauren Reimer: I tried them. Yes, absolutely. So I ended up in the hospital. After they vacc-ed everything that was stuck in my guts out, I weighed 80 pounds. I had about 20 pounds of crap hanging out in my belly, if not more, I don’t even remember. And that’s when I had to restart TPN. And since then, up until just about a month or two ago, I’ve been on seven days a week, 12 hours overnight. And a couple of months ago, I got to knock down one day a week, which was so exciting!
That hasn’t been a thing for seven years, and super cool to experiment with that.
But yeah, being very mindful of my body and what it’s doing.
Lauren: So does that mean that on a daily basis, you’re still living with chronic pain?
Lauren Reimer: I don’t identify as having chronic pain. I call mine more like chronic discomfort almost.
Lauren: You’re able to sort of live despite it or live with it, right?
Lauren Reimer: Yeah. And it’s not that it’s like, ‘ow, this hurts’ kind of pain. My rib cage, it’s been expanded because of how much stuff … all those years of my belly being so distended … my ribcage is big and just kind of tight-feeling, so I hate wearing clothes to be completely honest.
Lauren: Who doesn’t! So there is discomfort, not only on your skin and in direct contact with your body, but then there’s also the direct belly discomfort, too.
Lauren Reimer: Actually, my belly discomfort has decreased so much. Because once I started TPN again, it took a couple of years, but I basically went home NPO (no food by mouth) at that point. Because my body was, like, “No, we’re not accepting any new clients!” (laughs) And a couple of years later, I ended up getting a J-tube (jejunostomy tube), which is a tube that goes into your duodenum, which is a portion of the small intestine. And typically they are not placed to drain, but mine was, and so I was able to let a lot of air out and get a lot of stuff out that was just hanging out in there.
Lauren: So you’re not using the J-tube for feeding?
Lauren Reimer: No, my guts are not hanging out with tube feeds yet. Possibly in the future, you know, trials. But we actually placed the J-tube because there’s gut in between my abdominal wall and my stomach … because we didn’t want to puncture gut going into the stomach. So that’s why they placed my J-tube. But then a few months later, things weren’t even able to get to that point to drain, and I was still vomiting stuff that was just being produced by my stomach. That’s the thing that a lot of people don’t understand … you know when somebody has the flu or something, or the stomach whatever, and they’re, like, “I’m still throwing up and I’m not even eating!”
Lauren: You’re, like, that’s my life.
Lauren Reimer: It doesn’t matter whether or not you’re putting stuff in there; you’re producing, no matter what is happening. So I was still vomiting. And so I ended up … now I have a G- (gastrostomy tube), which goes into your stomach tube, and a J- tube. I’m able to use both of those for venting, meds, whatever.
Lauren: So in terms of what you’re able to put in your body … is it just TPN now? Can you eat solid foods?
Lauren Reimer: Yeah, I do eat solid food thanks to my draining tube.
Getting a piece of pizza is not as hard as you would think out of a small tube in your stomach!
It takes some skill. I always tell people that are, like, “How do you do this?” I’m, like, “I wish I could teach you a class, but it would be the grossest class of all time!”
Lauren: This is also separate from a colostomy or ostomy bag, right? It’s not like you’re using it to actually pass stuff. Because it’s been all the way through your stomach. You’re actually using it to pass it before it goes through everything.
Lauren Reimer: Yeah.
Lauren: So it’s not as digested in that sense, I guess.
Lauren Reimer: Yeah, it’s pretty much like throw-up.
Lauren: But you do it from your stomach, instead of your mouth.
Lauren Reimer: Yeah, right.
Lauren: So when you’re eating solid foods, it’s more like for fun and for taste. And you know that you’re gonna have to use your tubes later on to remove the foods.
Lauren Reimer: Yes. Things have gotten a little bit better. I kind of experiment … like, okay, maybe that food probably wouldn’t be happy going through my gut, but maybe a grilled cheese would be fine, because it’s very mild. It’s not got spices or anything which kind of make my gut upset. So sometimes I’m like, all right, let’s see how you do. And then, you know, we play … and whatever! I mean, some of the games I’m playing are going well, because I’ve gained some weight, and they haven’t added any calories to my IV nutrition.
So, you know, it’s different every day, and it’s a game every day.
Lauren: Is it something where … obviously, we can’t see it from the outside, right, but you’ve got your central line in your chest, you’ve got a couple of tubes in your stomach. So this is visible if you’ve got your top off kind of thing, right? And you recently walked a fashion show that was an accessible fashion show, where the clothes were designed to work around your various accoutrements?
Lauren Reimer: Well, not the whole fashion show.
Lauren: No, just the pieces you were wearing.
Lauren Reimer: Yes, I did. A friend of mine who is a plus-size model was posting about one of our local designers who was looking for some different models, like out-of-the-norm models I guess … what do we call us?
Lauren: I mean, this is also the normal people. So we have to normalize all this stuff, too. What do we call ourselves? Just people. People who aren’t models.
Lauren Reimer: Yes. Like everyday normal models. And I was, like, “That might be really fun! Yeah, put me in touch with her.” And Rosie was, like, “Yeah, girl, you’re in.”
It was so empowering. Terrifying and empowering.
It was a really cool day. I had a crop top on. And we actually tucked the shirt, because it went a little bit below my G-tube because it’s a little higher up, and so she was, like, “Let’s just tuck it in your bra.” My central line didn’t show, but I was connected to a bag of fluids, and she made me a clear backpack that I wore down the runway. too. So it was pretty cool.
Lauren: That’s really great for awareness raising. And then in terms of
chronic intestinal pseudo-obstruction, is this a common illness? Is this something where you’re a very rare case? Have you found other people like you?
Lauren Reimer: Yes, it is not common. With Google, usually you can search a diagnosis and it’ll tell you how many people out of this many people have it. If you Google it, it doesn’t have that statistic at all.
Lauren: So few people have it.
Lauren Reimer: Yeah. I have a group of girls; we all connected when one of our CIPO girls passed away after her transplant didn’t go well. We connected, and so we have a little group chat, and I feel like there’s probably nine of us.
Lauren: And you’re all over the country?
Lauren Reimer: We’re all over the country. Actually, when I first moved to Arkansas, I was really struggling to find a doctor situation — which never worked out. But that’s fine, because Texas is great for that. I posted in a Facebook group, and a mom commented back: “Oh my goodness, I live in Fayetteville with my daughter who has CIPO, and who is literally like your twin, with an ostomy.” And I was like, “Oh, my gosh.” Yeah, so we’re pals. She is so mature for her age that I think she’s 14, but I know she’s not … she’s, like, 11. Correct me if I’m wrong, guys; I know you’ll listen to this!
Lauren: You are connecting to people. And this is one of the skills that you have, which we will get to. The main thing here is that you’ve built a community around yourself, right? You mentioned your dad being helpful with doctors’ appointments and things like that. And I’m wondering if you discovered along this journey to where you’re at now, where things are pretty stable, that you needed a personal advocate at any point. Was it your dad? Did you have to become your own advocate? What’s that journey look like for you?
Lauren Reimer: My dad always, always encouraged me. He would always say, before every doctor’s appointment, before we did anything, “You’re your best advocate. Use your voice, use your voice.” Which has served me really well. Of course if I needed any words to be said for me — and when things get weird, that sometimes is necessary …
Lauren: And when you’re a kid, and it’s a little more confronting.
Lauren Reimer: Yeah, being a kid and in a children’s hospital … I was actually on the patient advocate team at Children’s because there was a teenager group that was, like, “We are not to. You talk to our face. You don’t talk to our parents. We can be a part of it.”
So yeah, I’ve been advocating for myself since pretty early on, a long time ago.
Lauren: Wonderful. And especially if you’re connecting to other patients who are advocating for themselves like you are, I’m sure that was also empowering to be around — whether it was for the same illness or not.
Lauren Reimer: Oh, yeah, we were all over the map. We were just basically telling them to stop treating us like we were four years old.
Lauren: Absolutely! I mean, there are groups that are formed to address that very need. So what about balancing the demands of work and life? You mentioned before we started this interview that it’s hard to work consistently, because you’re working around your symptoms, and you’re working around what your body needs. So what does that look like for you as you’re fitting into this 9 to 5 expectation in the world? And finishing college, and having to leave college because of all of your issues there. What has that looked like as you’ve found yourself, found your feet, and found your career path?
Lauren Reimer: I feel like I’m definitely still laying the bricks for my career path.
Lauren: Well, you’re only 27. That’s fair enough! In this day and age, you probably shouldn’t know what you’re doing till you’re about like 45, 50!
Lauren Reimer: That’s pretty much the range, right now? Perfect. I’m glad I’m on the right track.
Lauren: Yeah, totally. You’re in a great place.
Lauren Reimer: So, finding my path in the work world was a huge struggle.
Lauren: Yeah. Very fraught, it sounds like.
Lauren Reimer: I got a full tuition scholarship to this amazing art school in Oregon. That had always been my dream. I was, like, I’m gonna move far away. I’m gonna get a bunch of money to go; it’s gonna be fabulous.
My dream came true. And then I was there for nine months, and it was horrendous.
I was, like, I need help. So I came home, decided that I didn’t want to move back in with my family … because, you know, I’m such an adult at 19 years old. Then I decided I wanted to be a live-in nanny.
Lauren: Oh, taking care of other people!
Lauren Reimer: That was a fun choice, for sure. That was terrible also. Then I decided I was going to be an insurance agent.
Lauren: Oh, okay!
Lauren Reimer: Not so much good at that.
Lauren: Well, there’s always stable work in that field. I mean, it’s interesting because it sounds like, at heart, you’re a creative, right?
Lauren Reimer: I am. I knew the family that owned the insurance agency, and they knew that I was trying to figure out my life. And they were, like, “Hey, want to try this?”
Lauren: That’s cool. Maybe she’ll stick with us?!
Lauren Reimer: Maybe! And then I tried nannying again. And I was like, yeah, I have to take care of me.
Lauren: So that means that you have to work remotely, or work from home largely?
Lauren Reimer: Yeah. For several years, I was strictly on disability. I mean, I was in and out of the hospital constantly. But then a year-and-a-half ago, I got a job that is from home.
It’s a part-time job where I get to help others find the best TPN care for them.
Lauren: Wow, so that’s very specialized to your skill set really.
Lauren Reimer: Yes. Very, very specialized. And I love getting what I get to do. I love when people have the epiphany of, like, oh, my goodness, this could be helpful for me. And then getting to see when it is helpful for them. So I’m usually still in contact with the people I’m working with.
Lauren: It’s also expanding your network of people who either have similar conditions, or the same condition, I imagine.
Lauren Reimer: Yeah, absolutely.
Lauren: And I’m sure it’s really helpful for them to also be dealing with someone who gets it.
Lauren Reimer: Yes. Most people have never heard of anybody being on TPN for more than a year. A lot of times, TPN is referred to as a last resort therapy. Okay, maybe.
But it’s also very life-giving therapy that I’m thankful for every single day.
There’s a lot of misinformation out there that actually limits people from getting the care that they need. If they need TPN, they’ll wait years and starve.
Lauren: So it’s not readily available or prescribed?
Lauren Reimer: Gosh, no. The only statistic I can find online is that 40,000 people a year are on TPN in the US.
Lauren: That’s not a lot.
Lauren Reimer: That is not a lot. And if you factor in a pregnant woman who’s on hospital bed rest before the baby comes who possibly needs TPN. There are people that are getting TPN in actual end-stages of life, that are just using it to sustain if they can’t swallow or whatever it is. There’s always people that are on very short-term. And so if you eliminate all those people — which, there’s a lot of them. Also all the NICU babies who can’t eat, or whatever it is. And so all of us long-timers, there’s very few of us. And so when people talk to me, and they’re, like, “What? 13 years! I thought that I was gonna die soon.” And I’m, like, “No, honey.”
Lauren: No problem, you’ll be fine.
Lauren Reimer: Well, I mean …
Lauren: I know… you can’t say that. Well, and you mentioned, also, a friend of yours having a transplant that didn’t go well. Have doctors talked to you about your long-term care, and the prognosis for you, long-term? Does it look like a transplant? What does that look like?
Lauren Reimer: At this point? No. When I was in California, restarting TPN, there was mention of, “Hey, we think we need to take you up to UCLA to be evaluated for transplant.” That was terrifying. At that point, there were only 12 centers in the US. I did all the research from my hospital bed; I was, like, where should I go? But at this point, I need to be known by a transplant surgeon, just in case. My doctor has advised me to do that.
Lauren: And it would be intestines that you’d be having transplanted?
Lauren Reimer: Typically, you get a multi-visceral transplant. So you get a liver, a pancreas, a stomach, a small bowel and a large bowel. If anybody’s listening to me, and they know that’s not true, I’m sorry, but I’m pretty sure that those are the five organs!
Lauren: That’s basically your whole middle section!
Lauren Reimer: Yeah, just collapse it all.
Lauren: Yeah, take it all out, replace it all. And that’s got to be hugely intense. And I imagine there’s a lot of bed rest for something like that. So if you were in a position to be having a transplant, that’s something where you would be under lock and key for infections for a while, and you’d have your recovery period. It’s not like you get a new system, and everything’s hunky dory.
Lauren Reimer: No, and a lot of people who have gotten transplants are still on TPN, which is interesting.
Lauren: Wow. Yeah, that is interesting. Because sometimes that’s the way your body’s gonna react to these new organs anyway. So what about justifying your illness to other people? We know that as a kid, as you were waiting for your diagnosis, which you didn’t get until you were a young teenager … we know that the doctors were, like, “She’s been through trauma; she’s depressed.” Whatever. And also did nothing about that. But have you been in positions in your adult life where you’ve been confronted and you’ve had to be, like, “Would you like to see my J-tube?” Or, “I cannot eat solid foods all the time.” Or even going on dates and things and being, like, “Let’s not meet for dinner.” What does that look like in your world?
Lauren Reimer: Yeah, fortunately, not a lot.
I think I kind of put on this ‘no bullsh*t’ face?
Lauren: You’ve got quite a following on social media as well. So you’re very much living your life out loud. And being, like, “This is me. This is how it goes.”
Lauren Reimer: Yeah. I feel like when I get most embarrassed is whenever I order something at a restaurant. Because I can’t eat vegetables. And if there’s lots of spices and stuff, I can’t deal with it
Lauren: You need really plain stuff.
Lauren Reimer: Yeah, so I’m, like …
Lauren: I’ll have a slice of bread, please.
I’ll have the potatoes with the other potatoes … and the other potatoes.
Lauren: (laughs) I can’t wait you to come to Fayetteville and have a meal with you! Because I will also have the potatoes with the other potatoes, and the potatoes on the side.
Lauren Reimer: Yes! Sometimes, waiters will say a weird thing, like, “Oh, wow.”
Lauren: “Gee, you like potatoes.”
Lauren Reimer: (laughs) Or, if I say, “I don’t want this vegetable or this vegetable or this vegetable …” But there’s a lot of people who are my age who do order that way.
Lauren: Yeah, it’s becoming more normal. Honestly, because of diet culture. But also because we’re more aware of food sensitivities, too.
Lauren Reimer: Yeah, but also … adults not eating vegetables is what I’m mostly what I’m talking about.
Lauren: You’re talking about picky eaters.
Lauren Reimer: Yeah. So, you know, the stories that you hear about people with the handicap placard, getting out, and somebody saying something? I’ve never had that happen.
But when I do, dammit, the shirt’s goin’ up!
If I’m wearing a jumpsuit that day I’m going to be …
Lauren: You can at least show your port. Like, “I have a disability, dammit!”
Lauren Reimer: Yeah. I mean, not that I want that to happen.
Lauren: But that is always a common story, and to be prepared for that is important, I think. Because, especially as a young and seemingly able-bodied person.
Lauren Reimer: Right. And I don’t use it all the time because I don’t need it all the time. Actually, when I requested it from my doctor, I said, “This would be really nice to have when we go to concerts or when we go to where there’s a ton of far-away parking.” And the nurse was, “Well, don’t tell me that.” And I was, like, “I don’t think you understand. I should be able to go to those things, too.”
Lauren: There’s some kind of misunderstanding or misinterpretation that people who live with disabilities aren’t fully participating in life.
Lauren Reimer: Right. Unfortunately, it happened so quickly. And I think it shocked me. And she was probably out of the room so fast that I didn’t even … it just replays in my head sometimes.
I’m, like, why did I not say something about that?
Lauren: So it sounds like for you … and I like that you’re answering in this way because for you, this has always been normal. This has always been the norm. So there’s never been a question of: Gee, will it be weird? And will they judge me if I ask for these accommodations? You just do it. So whether that’s something inside you, or something that was taught to you by your parents, you are very much on your path and not concerned about other people’s opinions. That’s awesome.
Lauren Reimer: If anything, I’m also very much not an a**shole. If someone says something not okay, I’m very much more there to educate. I want to be, like, “Listen … no, that’s not okay.” I’m that person.
Lauren: You’re patient. That’s one of those things … I talk to people and we acknowledge that it’s also not our requirement, with chronic illness, to always educate people. When you have the energy to do it, it’s really wonderful to be able to do that because at least then you’re not being, like, “I can’t talk to you. Bye.” By explaining why, people perhaps will gain a broader understanding. So what about privilege? I’m wondering if privilege, or a lack thereof, especially as you’d said about the early days of being diagnosed and not having access to certain health care requirements. Has that played a role in your health journey? And have you experienced undue judgment or prejudice in the healthcare system, simply because you identify as female and live with what a lot of people might call an invisible illness — being written off as an hysterical young woman when you were a kid. What about that for you?
Yeah, I think being female didn’t do me any favors.
Just in that aspect. I’m a white cisgender female. Every time I’m in the hospital, I think about … these staff members who tell me I’m their favorite patient … how are they treating their other patients? This is something that I’ve started getting concerned about, is getting older. Because I was always the fun teenager patient, young 20s patient. Now I’m knocking on 30’s door!
Lauren: Then you’ll be the fun 30s patient.
Lauren Reimer: Hopefully. That’s my goal.
Lauren: I mean, if you’re fun, then you’re fun.
Lauren Reimer: This is true. It’s just …
Lauren: You want the doctors to like you.
Lauren Reimer: You kind of have to have the doctors and the nurses like you. And sometimes you’re just not likable in the hospital.
Lots of people are not likable in the hospital.
Lauren: Sure. You’re in pain. You’re in discomfort.
Lauren Reimer: That concerns me for a lot of care. Not necessarily myself, but that’s a thing that’s always in my brain. Like, how are others being treated? This is my experience, but it’s not everybody’s for sure.
Lauren: lt also seems like you’re being mindful of the people who are taking care of you, and that they’re getting good care. In the sense that they’re around good people. And that they’re enjoying that experience of taking care of you, too. The fact that you’re mindful of that, that’s probably like going the extra mile, right? Because they signed up for it. But that is one way to exercise some level of, if not privileged, influence in some way … if you make yourself amenable.
Lauren Reimer: Yeah, I think that is important. I try to tell people that I talk with, if they’re concerned about a doctor’s appointment that they’re going to, or they’re having a terrible hospital stay, or whatever it is that we’re talking about … number one, remember that they’re humans, too. Because sometimes they forget.
Lauren: Yeah, the system is rigged against them and against us, isn’t it.
Lauren Reimer: Yes. And typically, they’re able to fix problems. That’s what they’re taught to do.
And when you have a problem, and it’s a chronic problem, there is no fixing it.
And sometimes, I think doctors still expect themselves to fix the thing. And it’s, like, “But, honey … no!”
Lauren: Like, someone wants to be the Dr. House. They want to be able to find the answer. And you’re, like, “No, no, we have the answer. This is just how it is.”
Lauren Reimer: Exactly. And I’ve had that conversation with doctors a lot of times. They’ll come in and they’re scratching their head and I’m, like, “What’s the problem?” They’re, like, “Yeah, I just don’t know what … blah, blah, blah.” And I’m, like, “No, no, no. We’re just dealing with this acute issue. You don’t need to fix the whole shebang.”
Lauren: You’ve accepted that. And now they need to.
Lauren Reimer: Yes.
Lauren: So let’s just dig into one very big can of worms as briefly as we can here, about the health care system. Obviously you’ve grown up in the healthcare system, and I’m wondering if you can identify, particularly given your own experience, ways in which it works for patients and ways in which it’s failing us. And maybe, creative solutions that have come to you over the years.
Lauren Reimer: What’s really tricky is that I came from Dallas healthcare. And now here I’m in Fayetteville, Arkansas healthcare. And they’re so, so, so different. In Dallas, I feel like it’s so big. It’s so concentrated; in big cities like that, I feel like it’s that way. I mean, they have the best of the best, because that’s where they need to be, right? I guess. I don’t know.
But I feel like they’re less likely to listen because they think they know more?
Lauren: Because they have the authority of having a large hospital’s name behind them.
Lauren Reimer: So that’s stressful. But I definitely feel I’m better taken care of when I’m there.
Lauren: So there’s more access to more services.
Lauren Reimer: Yes. So it’s kind of a win/lose situation.
Lauren: It’s a double-edged sword, that one, yeah.
Lauren Reimer: And it’s the opposite double-edged sword here, because I can go to the doctor, I can go to the hospital, to the ER, when something’s wrong, and pretty much they’re, like, “Okay, what do they normally do for this?”
Lauren: They ask for your input.
Lauren Reimer: Yes. Because they don’t know!
Lauren: Right. It’s, like, it’d be nice if they knew more. But also, it’s great that they’re open to your thoughts.
Lauren Reimer: And also, sometimes you’re wrong, and sometimes it’s not the normal and sometimes they need to look for something else. And that’s when things can get really scary. Last fall, I had a central line infection and the doctors here … my blood cultures were coming back positive, but then they would say, “Oh, but that’s a contamination from the lab.” This happened about six times.
Lauren: Yeah, that’s not a contamination in the lab, guys.
Lauren Reimer: Exactly. Finally my Dallas doctor was, like, “Get down here. They’re crazy. Never go back there again.”
And I got down there and they were, like, “Um no, you need help here.”
Lauren: So you ended up getting treatment for that infection in Dallas?
Lauren Reimer: Yes.
Lauren: So you do maintain these connections in both places for different things and you’re sort of working the system your way when you need to?
Lauren Reimer: Yes.
Lauren: Which is great. I mean, that’s a way to do it, right. You’ve kind of personalized your healthcare in that way.
Lauren Reimer: Yeah! Like, I love my PCP here; she’ll be in communication with my doctor in Dallas. I go to a Dallas doctor appointment in a couple of weeks. It’s a five-hour drive, and that’s where my family is so I have a place to stay, and get to see them. So it’s better that way. I know a lot of people don’t have that luxury. Because paying for a hotel and transportation and all that, it’s a lot. It adds up real quick. And then you never get to go on a real vacation!
Lauren: I know. Well, this is the thing, isn’t it. How do you find wellness, and how do you find self-care when you don’t have the resources to do it anymore? Because you’ve spent it all on traveling for your health.
Lauren Reimer: No kidding.
Lauren: Which is a conundrum in this community. And that’s for sure. And you’re also working to try and solve that. So, we’re heading toward the end of our interview. And I like to end with these Top Three lists. I’m wondering what your top three tips would be for someone who suspects they’ve got something off? Maybe they already have a diagnosis, and they know that they’re living with chronic illness. What would you recommend to people who are looking at a lifetime as a patient; maybe already are a lifetime patient. What are your tips for them?
Lauren Reimer: Yeah, these are things that we’ve talked about in our talk today. My first one is, to never Google things! And everyone knows that, they know it to an extent. But they don’t always know it deep down.
Lauren: It doesn’t stop us when it’s the only place to get answers, sometimes.
Lauren Reimer: I know. But with so many actual humans who are living with these conditions, I feel like it’s so much better to form these connections with others who are dealing with something similar, than to go read some who-knows-what that’s been published on the Internet.
Lauren: Absolutely. Because unless you have a good bullshit monitor, or you know what your trusted news sources are in the world of fake news. And because anything can be published on the Internet, right. We live in a post-truth world, right? So ironic as it is, for those of us who are speaking truth, you either have to know … okay, I trust the Mayo Clinic. So if they have an article about it, let me see what they’ve got to say. But no, I probably won’t trust whatever it is … webdoc.com slash us or whatever … like, maybe I won’t check that source because I don’t know it.
Lauren Reimer: But it also definitely takes time to figure out what those sources are.
So be patient with yourself.
Lauren: And also give yourself the time to find those sources, because there are some good sources out there.
Lauren Reimer: Yeah, there really are. My next one is to find good doctors. Remember that they’re humans. Get second opinions. I feel like that’s pretty self-explanatory, but remembering they’re humans is so important. So important. Not to say you have to take everything they say with a grain of salt … but you kind of do! I will straight up tell my doctor, “I know you want me to take rounds of antibiotics every month, because that’s all you’ve been told to do for this. I don’t think it works. I’m not gonna do it. I’m doing fine without it.” And she’s, like, “Yeah, you’re right. That’s all I know. It doesn’t do anything for you. Let’s see what happens.” Have those conversations. Remember, they’re human, they want to talk with you … well, some don’t. But yeah, find a doctor who will talk to you.
Lauren: Most do, though. Most of them are doing it because they care.
Lauren Reimer: Yeah. So have those conversations that you think may be a little tricky. If you need to have somebody there with you, do it. Have your list of questions.
Lauren: Be prepared to communicate. Remember they’re humans.
Lauren Reimer: And then, my third is to learn to be your best own best advocate … which we talked about, too.
Lauren: Yeah, but that’s easier said than done, right? Like, there are a lot of ways that you can empower yourself to do that. And some of those ways are: finding advocates like you out there who are like …”Here’s how I live it. Feel free to copy and paste.”
Lauren Reimer: Copy and paste, yes.
Lauren: Work smarter, not harder, guys.
Lauren Reimer: Yeah, like taking notes, remembering things, holding yourself accountable … which, leading by terrible example when I wouldn’t weigh myself. Don’t do that. Take care of yourself.
Lauren: Right. Although I can understand for a lot of people who have dysfunctional relationships with food and eating and body image, don’t weigh yourself. That’s when not to weigh yourself. But if it’s okay to know that you’re at a healthy weight, when you’re 80 pounds when you need to be 120 … that’s when a scale is a handy tool.
Lauren Reimer: Yes, just like all those things … just take care of you.
And if you’re unable, to appoint someone else who can do those things for you.
Lauren: Absolutely. That’s really smart.
Lauren Reimer: And actually, along that note, if you’re really terrified of scary mail like I am, have somebody that can open it for you and read it before and kind of digest it for you. That’s kind of a side note, but that’s a thing that I like to have happen. Like, if I get a thing from Social Security that I know is stressful … it just stresses me out … their wording … just like, “Hey, friend, can you just read this quick and give me a little rundown … let me know if it’s bad, good, medium.”
Lauren: And that also gives you a sounding board. The ‘Hey, friend.’ To sort of be, like, “Well, here’s why that’s shitty.” And, “Oh gosh, that sucks and here’s why.” Or, “Yay! And let’s have a celebration.” That’s where it’s, like, bring your community in.
Lauren Reimer: Yeah.
Lauren: Now, this is a fun Top Three. This is always my favorite because it’s really unpredictable what people will say … three things that give you total unbridled joy, that you’re unwilling to compromise on. Despite the fact that you’ve had to make lifestyle adjustments to manage your symptoms. So these can be, like, cheats — whether it’s that piece of pizza that you have to squeeze out of your G-tube later. Or guilty pleasures, secret indulgences, comfort activities — if you’re having more pain than usual. But especially if they interfere with your treatment. What are your top three “I will not compromise. I love it. Never going to stop it.”
Lauren Reimer: My first one is, I love a good Cosmo. I don’t drink regularly, but a lot of people, I think, assume that when you’re on TPN, you can’t drink — because of a liver situation.
Lauren: But you’re here to tell us you can!
Lauren Reimer: I’ve never been been told that wasn’t allowed. I mean, obviously, I’ve asked, and they’re, like, “Well, I mean, don’t drink 14 glasses a day.” When you ask those hard questions, be prepared …
Lauren: For a hard answer.
Lauren Reimer: Or not. I don’t know. You live your life. That’s kind of the answer I’ve gotten. Actually, I just mentioned the refusing to take those rounds of antibiotics that people do with my diagnosis. My body’s pretty much proven that it’s not necessary. So I’m just not gonna do it. I didn’t write a third one. What are some of my rules I break?
Lauren: Well, some people don’t even have three. And it doesn’t even have to be rules you break. It can also be things you do when you feel like sh*t, that give you joy. Maybe I have my heating blanket, or I have a bath, or whatever it is.
Lauren Reimer: I did just think of a rule that I have been very known to break. This was before I had my tube, so this a few years ago, Lauren. But it’s a really good one. So when I would be in the hospital and I’d be NPO — so, no food by mouth — I would make them bring me an ice pack. And in the hospital, the ice packs have legit ice in them, right? That weird long bag, and they put ice in it, and it has this little clip on it. Well, I would have them bring me one, and then I would lay on it to make it melt. And then I would open it up and drink the water. Why am I telling you guys this?? (laughs)
Lauren: So, lukewarm water that has been warmed by your body. You weren’t allowed water at the time?
Lauren Reimer: No, I was NPO in the hospital.
Lauren: So not even water when you’re NPO.
Lauren Reimer: No, and it was not lukewarm because it was ice water. So I would just warm it so the ice would melt a little bit, and then it would be like ice cold delicious water. And then later in the night or whatever, I would just put some water in it, like it had melted. But I was also connected to suction, so I didn’t really understand. Eventually I told my doctor I was drinking water. She was, like, “Your output is out of control!” And I was, like, “I know!”
Lauren: “I got thirsty. I’m sorry.!”
Lauren Reimer: Yeah, but that’s a pretty funny one. So …
Lauren: Hey, I like it. I like it. We all have our refreshing things that we do.
Lauren Reimer: Yeah. drinking out of ice packs in the hospital.
Lauren: That’s the way to do it. Well, Lauren, tell everyone listening where they can find you.
Lauren Reimer: So I am @PrettyCouchPotato on Instagram. I also have a Pretty Couch Potato page on Facebook if you’re not an Instagrammer … I pretty much just share what I share on Instagram there. It’ll be PrettyCouchPotato.com still, whether or not it’s Pretty Couch Potato, or it’s the club, it will still be the same URL.
Lauren: Well, Lauren, thank you so much for being on the show today. It’s been so great finally meeting you, getting to chat with, getting to know who you are. And I can’t wait to get to a retreat.
Lauren Reimer: I’m so excited about having those! Thanks for having me.