Interview with Heather Boughey, Crohn's patient

Heather Boughey was diagnosed with Crohn's disease in July of 1998, just as many of our modern treatments were being approved for use by the FDA. Hear Heather's story and find out what she wishes she knew when she was first diagnosed with Crohn's disease.

Transcript

This is Brandy Schantz, and you're listening to Living Chronic. Today I'm here with Heather Boughey. She is a Crohn's patient, inflammatory rheumatol, uh, sorry, inflammatory arthritis. I, I, I'm losing all my head right now. Um, patient and has just been battling with this since 98. So welcome.

Hopefully, I don't forget one more word, but I'm sure it'll happen. I've got, uh, I've got the lovely brain fog as I'm sure you're . We've all lived through it. Um, just having a little bit of a flare. It's all right. So you were diagnosed with Crohn's disease, you said in July of 98 with an ER visit. So how did that go?

right.

Well,

Well, we've come a long way since 1998. I have read that, you know, the diagnosis of Crohn's disease is going well. All i b D has been going up, but we've come a long way. And even being diagnosed in 2013, it took years to get my diagnosis. Years. It was insane. They kept telling me everything under the sun that wasn't Crohn's disease.

And uh, so I'm sure that, um, You know, 1998, uh, you definitely had a different experience than I did. Uh, as a matter of fact, you said you were one of the first people to go on Remicade for your Crohn's disease.

Wow.

Right.

Yep.

Mm-hmm.

Oh wow.

Yeah.

Mm-hmm.

So you've done all the TNF inhibitors really?

Right.

right?

Yes.

Yeah.

Well that's what it's about, right? Um, I won't go back to it ever, the severe reaction I had, but you know, our entire lives were just a balancing act of what are our symptoms right now and how badly do we want to get rid of them so that we can go to work, see our family, get out of the bathroom for an hour, you know, all of those things.

No, congratulations.

No, you're right. And you do. I, I mean, The exact same. I don't, you know, the first time I was put on Humira, all I really cared about was I was getting off the six mp, which was thinning my hair and off the prednisone, which made my face blow up to 10 times. Its usual size, and I was in my, I believe I was in my late thirties.

Cause I was diagnosed later and that's all I cared about. I was like, oh, I get to go back down to my regular weight and get my hair back. Fabulous. And of course, yeah. Now I'm like, oh, you know, things are already breaking. Do I really wanna live the rest of my life with ms? No

Oh, different lens. Whole different lens. You know, it's, I always like to say to people, I'm like, you know what? At my age, nobody's really worried about how pretty I am.

Mm-hmm.

not, not even for a second. I tell you what, I've talked about this before with people. When you have a good spouse or a good friend, a good caretaker, that's worth everything right there because. You know, when you first get married, there's no way of knowing that that person's really and truly gonna be there through sickness and health.

But when you're a Crohn's patient and he's, he or she's still around and helping you out, you're like, yeah, this is where it's at.

Mm-hmm. . Yep.

Yep.

It's standard.

Well, no, exactly. I don't even need to tell my husband what we need to do somehow, somewhere along the way, as I'm on the floor in pain, there's already been a call to the ERs that are expecting me. He's got the car up and running. He's just like, just come on, let's, let's go.

No.

Exactly, or you don't wanna talk about it like, I have Crohn's disease. Please don't ask details.  if I'm with another patient. Sometime it's like, okay, this is what I saw yesterday and it was not good. But you know, my husband, he's, he's seen a lot, but, uh, you know, and I'm surprised he's still attracted to me , but.

Sometimes I would just wanna protect him, and he understands that. I'm like, babe, don't come in here. Don't come in here.

Try to be attracted to me next week.

I talking about the, the people who love us most. I learned something new from you today because I never had children, so I didn't know how Crohn's would ever affect me. Going through a pregnancy and it affected you post-birth in a bad way.

See the beginning of this story sounds like, yes, get pregnant,

Hmm.

It's always the best result when somebody says that to you.

Mm.

Yeah, that's all that matters. It's a shame that doesn't continue on is like the beginning of the story. Cuz the beginning of the story sounds like, oh, if you have Crohn's disease, get pregnant. That is. No, no permission. Give it to me.

All goes wrong.

at first when you started talking about it, I thought, well, gosh, I should have, I wish I had known you years ago because Steve and I had talked about, you know, having children and we just, just thought, well, with the Crohn's disease, does that even work? And it does, until it doesn't. So that's always good to know.

It's interesting to me when you talk about the doctor who said, well, you're just depressed because I've actually been shocked at the number of doctors who've said the same thing to me, that's not what's causing this doc. I am depressed thanks to this issue. Um, and then how many of 'em don't really address that either?

Able to put the same thing? Mm.

Exactly. It's not the same story I talk to, same story. We all go through the same thing. You know, you're telling this doctor, Hey, I have a problem. This is what I'm experiencing, and it's, oh, well I think you're just depressed, or you just need to exercise more, or, you know,

Oh, ex. Exactly. I mean, what, what was I supposed to do, doc? You know, um, I spent so much time, I, I told you, I think, you know, my congressman's sick of hearing from me. , but there's just two problems that, that we can definitely focus on fixing. One, just the lack of doctors. I mean, we really need to start issuing those visas to foreign doctors because we're short.

I can't get in to see anybody. And then the mental health aspect, you know, um, I don't, for the life of me knowing what I know now, why was I. , um, paired with, uh, a psychiatrist, psychologist, somebody, the millisecond that I was diagnosed with Crohn's disease, of course I'm depressed.

Yes.

The dogs now.

Yeah,

are so.  or if you can even get there. Um, you know, I remember seeing a, you know, I love to read, I've always loved to read and I read something years ago about how the healthcare system in rural areas of America especially, it's just almost nonexistent, you know? And then, and um, I believe that actually may have been a UN report even.

Cause they were, I mean, there's entire areas in the US.  the UN has classified as Third World. They don't even have access to a doctor. And I think it was in, I can't remember what year it was, the year that, um, my Crohn's was just, oh. I mean, I just could not, it was so bad and I couldn't go anywhere. And normally for Christmas we would go to The Bahamas, cuz why wouldn't we?

But I couldn't, not that year because of all the issues I was having. I needed to be somewhere close by so I could get to a hospital. So we just went up to Nemacolin in Pennsylvania, and I'll never forget it. We were sitting there and I'm just complaining about my vacation in Nemacolin instead of The Bahamas.

Like that's a real problem. Third world problems are not the same as my first world ones, obviously. But there was this poor kid on the news they were discussing who had just died of Crohn's disease. And I thought, my gosh, how do you, I mean, how does it happen? Well, you just don't have access to.

Absolutely Absolut. Very good resources and sometimes you're two or three deep. When I couldn't get in to see another gi, I got to see one at the Veteran's Affairs Hospital in dc And then also I've got another one. So I have two, um, at Walter Reed. So, uh, very lucky for where we live. We live for certain.

Um, but even where we live, I don't know. I, I, I've been a little surprised at how we don't just put two and two together and the second somebody's diagnosed with any, you know, kind of autoimmune disorder or disease, chronic illness that we aren't immediately referred to a psychiatrist, psychologist. I just find that very interesting.

you know, it's a battle. You're gonna be depressed because you can't do the things you normally would, or you're having to make decisions between the drug that could cause MS or not being able to go to work because of Crohn's disease. You know, and it's, that's a decision that's it's, you know, it's nothing I would've ever wanted in life.

I'll say that.

Cool. Yeah.

Yeah.

Exactly. That's why. Absolutely. Absolutely. That's why I keep asking everybody. I ask everybody, what do you wish you knew?  when you were first diagnosed because there was just so much that just no one told me. Um, simple things too. Um, I was, uh, I did an interview with, uh, a director from the Crohn's and Colitis Foundation a couple of weeks ago, and we talked about little things that she just, you don't know and nobody thinks to tell you.

Like when the doctor says you're in clinical remission, that does not mean the symptoms are all. And that just confused me at first. I, well, what do you mean I'm in clinical remission? I'm still dealing with a lot of stuff here, guy. Um, nobody, nobody told me about, um, the protections I would have in the workforce either.

I just assumed that, you know, thanks to this disease and how much time I had to. At home because I couldn't get out of the house, that I was just gonna have to do something that would enable me to stay at home, and that's why I changed careers. Nobody ever talked to me about, Hey, you know, there's other ways.

Let's discuss this.

Yep.

Yeah.

Mm-hmm.

Oh wow.

Yep.

I think that's amazing.

This is not okay.

Right.

right?

Yes.

You know, I think that's probably the best lesson to learn, honestly, and I, you know, good for you. I know how to stand up and go to HR like that. Because it's taken me years, it took me years to get to a point to say, you know what? I'm disabled. I'm covered by certain laws. Um, you need to listen to what I'm saying.

I know my body. Um, as I've said so many times, I've, I, I think, um, I've gone numbed. I just forget, I'm even saying it is now. I didn't go to medical school, but uh, I know exactly when something's wrong with me. So you need to go back and take a another look and see what else we can do. Took me a really long time,

right.

right? I, I have experienced that at 12.

Well, and I believe, you know, I've. Read about this. I obviously have never been able to see it myself, not being in the medical industry, but I have read that there's now something doctors, there's some network they can put in there and say, you know, Brandy Shantz, she's in here looking for meds again, and they can actually try to flag you, which is frustrating.

I understand there's people who are addicted and they are shopping, but you.

it's, yeah.

Yes.

Mm-hmm.

I think the same thing. Everybody thinks I'm faking it. Um, I had, well, I, it's hard,

you know, you're always, I'm always trying to over justify myself really. I don't like drugs. I don't like to take drugs.

Yep.

All the time. All the time. I got lucky for a while. I was always, when I needed to go to the er, Steve would just take me straight to Walter Reed and there was a nurse in the ER that I, I, I swear she was always there when I was, and she knew my favorite pain meds. She knew all my issues. She could step in for anything.

No, no. This is Brandy. She's got Crohn's disease. We're dealing with some extra stuff. We might have an infection, you know. She doesn't like that pain. Me. Let's give her this one. She was brilliant. Brilliant. I miss her cuz you know I didn't have to do the explanation thing. She's like, no, no. Everybody back up.

I

know.

Over.

They really are. Oh, I, I have cried tears when I've lost a favorite doctor or nurse. Like, no, you can't, don't, don't. I had an amazing doctor at Walter Reed that was so good. He, I, I'll, I'll never forget him. He would call and check on me, and I remember it was during the Olympics. Whatever year I, maybe 2016, whatever year was, you know, the Olympics that year.

Um, Kathleen Baker won gold in the swim and she has Crohn's disease and he called me to see if I was watching and, and I just thought that was great. Cuz you know, he always, he was so proud of me for still being athletic despite having the Crohn's disease. Uh, so he was great, but then he was active duty army and they promoted.

I mean, not deserved a promotion, but guys let him keep being a doctor. He had to go be a manager. I was like, oh.

I know, yes. I usually start and get comfortable. We have a story,

have a drink, so, I'll ask you. I think, you know, um, you know, your, your advocacy I think is just amazing. Um, being able to advocate for yourself is the hardest lesson to learn. And, you know, some of it, this just comes from experience, I think, you know, you tell people, no, tell the doctor, no, you need to do this.

But it's difficult, especially if you're not a very assertive person. I always like to tell people I'm kind of a pushy broad anyways, but,  probably the hardest, uh, lesson to learn, honestly, for most people. Um, so, but other than that, what, what's the one thing you really wish you knew when you were first diagnosed with Crohns?

Yeah.

Yep, that's right.

Mm.

We're loud. Yeah.

Yeah, I think that's, that's great. It's always, always good to end on a positive note. Life can be difficult, but hey, we're still, we're still living a pretty good life. I like that. Well, thank you Heather. Really appreciate you coming to, uh, speak with us and, um, , hopefully we get you on again another day.

 📍 Arthritis.

Thank you, . Thank you.

It's all good

medicine. Brain

Yes.

Um, I had dealt with weird abdominal pain for, I don't know.  from age 16 17 1. I did have endometriosis, so that caused some of the abdominal pain. Um, as a child, I've always had GI issues. Um, even as a baby, I apparently would throw up upon anyone who picked me up or moved me. Um, so , I've always had weird stuff.

I was on ulcer medicine in sixth grade. Um, so they thought maybe there was something, you know, going on with my gut. , you know, kind of was like, eh, it's Heather's weird gut. Um, I'd been two prior ER visits, um, and was sort of, kind of poo-pooed, um, you know, with some GI issues and they were like, mm-hmm. It's okay.

Gave me the lovely cocktail of, you know, malos and everything to drink at the hospital and sent me on my way. Um, I wound up having some horrible GI issues. Um, went to the, actually a friend at work drove me to the er. Um, it was a Friday night, uh, you know, got admitted. They told me that I probably just doing blood work and a stool sample.

Probably had Crohn's, toxic Megacolon or Crohn's dis or colon cancer. Um, but they wouldn't know until Monday till they could do. The colonoscopy, apparently they don't do 'em on the weekend. So that was a very long weekend,  figuring out what was going on. Um, and then I was diagnosed on the Monday and Crohn's disease, which I had never heard of and knew absolutely nothing about and did not have a smartphone with me.

So was calling, um, friends and you know, some family with computers saying, Hey, , figure out what you can print it to me so I can read it. Um, I had a wonderful GI doctor who explained a lot to me, but I am an information person, so I wanted to read everything I could. Um, so you know, it was, I, since then, I'd not heard of a single person with Crohn's disease back in 98.

Now, 25 years later. . It's amazing how many people I do know that have it. Um, so I don't know if it's increasing, if people are just becoming more aware or what, but it's, you know, and I seem to have become the expert with friends who are like, my son was just diagnosed. Can you talk to him?

Yeah. Um, tn, I, I actually looked it up prior to talking with you cause I was, you know, wanting to, uh, TNF inhibitors. August of 98, a month after I diagnosed was when they were first, um, approved for use. So when I was first diagnosed, I was taking upwards of 30, 40 pills a day between, I mean, prednisone comes in five migs, so you're taking a handful of those when they have you on, you know, 60, um, Asacol, six mp.

That was sort of the cocktail that you took of meds. And the doctor just said it was a balancing act of my symptoms versus how many pills I wanted to take in a day. Um, so when, you know, late 98, he came to me and said, we have a infusion. , um, that's called Remicade. It's extremely expensive, but your insurance covers it so you know, would you like to try that?

So definitely sign me up. I'm tired of, you know, I'm 26 years old or whatever at the time. And, you know, lugging around a bag full of pills, , cuz it was morning lunch and dinner, um, was not fun. And then also being on sky high Prednisone and then taking sleeping pills because if not, I was bouncing off the ceiling at three in the morning.

cooking, macaroni and cheese and heating up chicken in the middle of the night so I could eat , um, from the cravings you get. So when I started on Remicade, the theory was give it to the patient as needed. Um, so there was no set schedule as all the TNF inhibitors have now. Um, so you know, I'd have it maybe once, twice a year.

Um, and that. You know, going pretty well, um, later found out that the sporadic use of Remicade gives you a greater risk of reaction. So after I was off the Remicade for a bit back on meds, cuz I had switched doctors, um, Because my favorite doctor left and moved. Unfortunately, when I went back on Remicade, they explained to me that I had a higher, um, chance of a reaction to it.

So before I even got the Remicade, they would premedicate me with Benadryl, some other things. They had to slow my titration, so it would take me eight hours to get my Remicade infusion. Um, yeah, six to eight hours was my typical infusion. . Um, I was able to be on it for about two more two years on the regular schedule.

However, my last infusion, my blood pressure dropped to 70, over 40. Um, so yeah, they were like, get outta the chair, start walking, move, do something, and was told that, you know, I can't do Remicade anymore. And I was kind of sad because that really helped , um, a lot. So that's when I switched back to. Or switched over to Humira, which I was on for eight years, that lost its efficacy.

Um, and now I'm on Cimzia. So.

Yep. , yes. Been working well, and it's a catch 22 with me because with the inflammatory arthritis, the TNF inhibitors helps both the Crohn's and the inflammatory arthritis. If I switch to a Stelara, one of those that is specific for the Crohn's, we're not. , if that's gonna affect, um, the arthritis, which I have really bad.

I get horrible inflammation. So, you know, in talking to my rheumatologist who I adore, um, actually like her better than my GI doc, um, sh you know, she's monitoring me closely and then trying to, you know, if Cimzia stops working or which eventually probably will, um, you know, what options will be looking at for me.

So not happy. I'm on a TNF inhibitor, but it's what's working best for me,

obviously,

and I will say my point of view. As I've gotten older, I turned 51 this summer, which still is not old, but when you're, when you're 30 and you're like, eh, it's got a black box warning, you know, it might shave some years off. At the end when you're 30, you're like, okay, that's fine. I want the quality of life 20 years down the road.

You're like, Hmm, let me, let me think about this. I still want the quality of life, but don't particularly wanna shorten it with a bad reaction. So

Mm-hmm.

Yeah. Yeah. You do start to look at it differently through the years

Yeah.

I've been married 27 years. He's seen me, you know, through all my meds and all my changes. So I, I, that's not a concern as much anymore.

Yes.

I've often, occasionally had to explain to friends I, my husband is wonderful. Um, . There's times where like I've rushed to the ER and he shows up an hour or two later cuz of work. It's not out of any, not caring. He's totally used to the drill. He knows I'm gonna be in there, I'm gonna have testing, I might have pain meds and be a little loopy.

Like, you know, he's, he knows the drill. The one morning I, he, you know, we tease about it. I, I get kidney stones because people with Crohn's absorb. , um, and it can cause kidney stones. And the one morning I got up and the kidney stone hit and I'm like curled up in a ball on the bedroom floor for a second, trying to catch my breath, and John walks in and just looks at me and goes, , I guess I'm calling in sick to work today.

You know, . Just kidding. Most people would be like, oh my God, are you okay? You're curled up on the floor. And it wasn't a like a knock on him that he said this. It's just, you know, they get used to it. It just becomes part of the routine and I appreciate that cuz I couldn't deal with someone who'd be like, oh my God, are you okay?

He knows I'm in pain. Leave me alone. Just, you know, you do what you need to do and we'll go to the hospital. . Yep.

Yeah, yeah, yeah. So a good taker, caretaker doesn't need to be a smothering checking on you all the time. It's just someone who knows what you need and sometimes knows if you're in pain, you just wanna be left alone. . Yeah. Yeah. . Exactly.

Yes, I can definitely relate . Yeah, definit.

Yes. Yeah. Um, I was in remission and pretty steady on meds, um, when I got pregnant and actually because of the endometriosis and the Crohn's, we weren't even sure. , you know, if we were gonna get pregnant. Actually I found out on a Saturday I was pregnant. We were scheduled for our first I V F appointment on Monday, um,

So it worked out, um, very well, quite surprised, but good surprise. Um, I was in remission when I got pregnant and stayed in remission. Um, had a very healthy pregnancy. No gut issues. It was like, whoa, I'm not all meds.  and my gut's acting normal. What? What am I, 14 again or something? This is awesome.

beginning of the story was great. Um, a few, uh, we had message boards back then on the internet. There wasn't Facebook and whatnot, and a few of the message boards from Crohn's, you know, I'd sort of seen that. Hmm.  post-pregnancy with the hormone dump that ev all women experience and you know, your great thick hair starts thinning all those things the Crohn's can flare, um, post-pregnancy.

So I was like, mm, okay, we'll see. Well, yeah, that was 100% correct. Um, you know, I didn't breastfeed mackenzie so I could get on my medicines again quickly. They're not really compatible, um, with breastfeeding. So, um, and had some judgey people who were like, oh, you really need to breastfeed. I'm like, no, I really need to get medicine back in my body.

yeah, it'll be better for her if she has a healthy mom, which, you know, was a little hit or miss. Um, probably the first six months after I gave birth. I was in the hospital cumulative, cumulatively almost about a month. That's when I started to really have the issues with the inflammatory arthritis, um, from the Crohn's, um, you know, is very depressing when you have a newborn and it, you can barely get off the sofa to, you know, Pick up, hold, move around with your child.

Um, luckily my husband became a stay-at-home dad after she was born because he had a wife that was having a lot of issues with her Crohn's and a lot of joint issues, you know, and a newborn baby, which thankfully newborns aren't like toddlers and running everywhere. So that was one  one helpful thing with him.

But you know, yes, post postpartum. . It was really hard. I had gone to a rheumatologist, um, cuz this was, like I said, really when the joint issues started, um, the first one I went to told me I was just depressed and needed to exercise. Um, you know, I tried to explain, you know, I've read that Crohn's disease, you can have joint issues as you know, other things and, you know, got poo pooed and told I'm just depressed.

Um, so fired him immediately, never went back and found a wonder. Yes, yes. Um, found a wonderful, um, rheumatologist who specialized in people with who had I b d and I b s, um, at Hopkins through a friend who hooked me up. And he was amazing and like explained everything that I was going through and that it was normal, that these, you know, joints hurt that this was going on and tied it to my Crohn's.

So, and then unfortunately moved to another state again to practice medicine . , but was very thankful that, you know, he listened to me. You know, I, I mean, yes, I was depressed, I couldn't hold my kid, but the depression wasn't causing my lack of motivation, you know, , it was, you know, so it was, it was, yeah, a little rough the first few months after pregnancy, sort of why we decided one child was, you know, we had one good, healthy child and you know, let's not push anything because didn't wanna risk my body.

Yes.

Oh yeah. . Yeah. I'm just gonna get pregnant all the time because this is awesome. . Yeah. Yeah. It's that giving birth part that messed it up. . Yeah, exactly.

Mm-hmm. . Yes. Exactly. Exactly.

Yeah. Yeah.

And you also wonder if it was a guy going in with the exact same issues, would the doctor look at the guy and say, you're just depressed. You know, , we women kind of get the double whammy. Mm-hmm.

Yeah. Yeah, I mean, I was reasonably depressed. I had this newborn, this is the great time of life, you know? But I could barely move. Like my  husband's doing everything, helping me off the sofa, you know, with my joints acting up. So yeah, you're gonna be depressed if you have a baby and you can't, you know, enjoy life.

Mm-hmm. . Yeah.

Mm.

Yeah. And I've always. Considered myself lucky. And you in a sense, we're in an area with a lot of good teaching hospitals, um, you know, a lot of great resources. I couldn't imagine if you know, . I lived in a state where you don't, I mean, I have Hopkins, university of Maryland, great DC hospitals, all within a 30 minute drive of my house where I live.

You know, I have multiple choices. And this, sorry, this is not a knock on community hospitals, , they're talking to each other. Um, . Yeah. This is not a knock on community hospitals or anything like that. Um, there's some amazing ones. It. . I always wonder, you know, cuz I, I had my best doctors when I was at Hopkins, university of Maryland, the big teaching hospitals.

Um, you know, I always wonder, you know, you hear about hospitals closing and things like that in other states, how people do it, you know, when they don't have close by multiple resources, because I've had to switch doctors and, you know, we've talked about that switch around. So, you know, I can't imagine living in an area where your choices of GI doctors are limited.

Mm-hmm. . Yeah, exactly.

Yeah.

Mm-hmm. . Yeah.

Mm-hmm.

Mm-hmm.

Mm-hmm. . . Yeah, exactly. Exactly. You know, it's, it's, like I said, I count myself lucky that I live in the area where I live with so many resources and good resources, um

mm-hmm.

Yeah.

Yeah.

Yeah. And you know, as I said, when I was diagnosed, I didn't know any else, anyone else with Crohn's, so I didn't have. A person I could, you know, just talk to easily. And I, I know there's support groups. Um, I'm an extrovert, but sometimes I'm shy about things. And it was like, uh, not sure. I wanna jump into the whole support group thing.

Not knocking them. I think they're wonderful, but you're so overwhelmed. At first it was like, uh, I'm not sure. Um, , you know, it'd be really, it would've been really nice to just talk to someone, cuz at that point in time I'm like, ah, how does this affect my whole life? You know, go, I'm 26 years old. What is

What does this look for for my life? For having kids for just, you know, , all sorts of things. Um, so, you know, like I said, I have friends whose kids have been diagnosed. Um, other people have been diagnosed and, you know, I, I always, a couple had reached out to me, you know, , what would you tell someone newly diagnosed?

I'm always happy to say that cause it would've been just nice to have the one-on-one when I was diagnosed of someone you know, besides a doctor because granted they do give you advice. I had a great doctor who could, did, you know, talk to me about everything. But there's just like the personal life questions, you know, , that someone has to have had the disease to talk to you about, to truly underst.

Yeah,

Mm-hmm.

I once had, I, I've blessed two companies in the company I've worked with for 15 years. I've had amazing supervisors, directors who totally understand my disease and typically not make fun of me. But we joke about it. It's like, oh, it's one of those weird 1% things. Heather's gonna catch that because , you know, she's, she's had, you know, when Covid first started and I was like, Hey guys.

Immune systems like jacked up. I, I'm tagging out early before, you know, our company even shut down. They were like, oh yeah, we totally expected ju to  go hole up at home and, you know, not be, so I, I have, you know, I have a wonderful company for the past 15 years. It's extremely, um, understanding of it. Um, back in the early nine.

Or I'm sorry. In the early two thousands I worked for a company and there was a time where I was in a bad flare up and having issues and work from home was really. Tenuous spec. Then if anything, and I did, you know, I could go into the office and work for about five hours a day, and that was about my max of what my body could handle.

And once I started feeling better, um, I said something to my boss at the time, um, you know, that, Hey, I can go back to eight hours a day, this and that. And she's like, well, you owe me like, I don't know, 52 hours. I'm like, what? What do you mean? She's like, well, you only work five hours.  a day. You know, you're salaried, but you were here only five hours working, so there's, you know, a bunch of back hours you owe me.

And it was, you know, I'm like, well, federal law, I'm doing the essential parts of my job. I am covered under, you know, , a couple different things. And you know, then she made the, well, I don't care what federal law says, you still owe me these hours. It's like, okay, so I need to talk to HR about you because , you know, but I was kind of proud of myself for doing that cuz I was still pretty young and you know, Normally I wouldn't have talked back, but it was like, wait a minute.

No, this is  I gave you. Yeah, I gave you work. I did my job. Like you didn't understand. It hurts me to come in like I feel like crap and I'm still able to do my job. Um, , you know, and I, I manage commercial real estate, so it's not just a sit at a desk, you're, you know, running around buildings, dealing with tenants, um, things like that.

So, yeah, no, I was, I was not great at speaking up for myself. Um, if there's one thing Crohn's Disease  has taught me in life is to really advocate for myself, either with doctors, with employers, like that one supervisor. , you know, with text. Even like if I go into the ER on something different, you know, I will, recently with the kidney stone, they were going to give me Tramadol, Toradol, Toradol, sorry.

Which we can't have. It's a massive insane dose . Um, it's great with kidney stones. Um, you know, but it was like, hey,  guys pay attention. I have Crohn's disease, can't have this. Um, instead of just, oh yes, doctors, right, I'll, you know, listen, so you know, it, it, advocating yourself is so, so, so important. Um, you know, informing yourself and advocating yourself and finding doctors who are partners.

I have fired a doctor who, uh, a GI many years ago. When I told him how I felt, you know, he was like, well, yeah, but, and I'm like, no, I've had this disease wall. I know my signs, I know my symptoms. You know, you've gotta be a partner with me in taking care of this disease, not ignoring what I'm telling you about the disease.

So, advocating for yourself is really important.

Yeah. Yeah. . It does. And do you have, um, you know, also when I was first diagnosed, there wasn't all the, um, extra looking at all the pain meds. You know, it was before the Sackler family and all the issues. Um, and that, and, you know, they would give pain meds.  for the Crohn for when you were in pain. Um, and I remember once, you know, the opioid issues started becoming, you know, more prevalent with the doctors.

You know, having one or two ER doctors I think thought I was, you know, pain med shopping type of thing. And you know, it's always so frustrating. You know, it's like, no, I have a, i, I know that they come in and say, oh, I have a kidney stone so I need you to give me this. Like, no, mine's legit. Like this is legit pain , I swear.

And it, it's frustrating when you know they look at you that way. I, you know, tease my husband cuz you know, he's been in the ER and. Hospitals with me many times and he's familiar with a lot of the pain meds I get. And I've told him, don't mention any pain meds cuz they're gonna think, you know, , I'm here just for that.

Like, you know, , I know you're doing it because you know which ones work best for me, but don't say anything because I don't want them to think I'm, you know, hospital hopping to get pain meds. Um,

Mm-hmm.

Mm-hmm. . Yeah.

Yeah. Oh, I know that's an issue. But I just, I get a, you know, this year I've had four kidney stones that have put me in the ER because they just flattened me out. And, you know, you just, you get nervous also when you go in  because you're like, uh, are they gonna, you know, this is the fourth time to the same er, are they gonna, you know,  just wonder about me.

So, you know, and there is an issue, you know, I'm not knocking that, but it's, it's also.  when you have legitimate things and you're trying, you know, because then you start doubting yourself like, oh my God, I look like, you know, , I'm doing this. So, yeah. Yeah. So that, that balancing that with your self advocation, you know, sometimes you're just like, ugh, where, how do I land in this

Yes. I swear I handle pain. Well, if I'm in here saying I'm in pain, it's really high pain. Like, you know, . Yeah, you, you do that. I was just doing that. I tore a minute in my meniscus over the summer and it's hurting again. And like, literally again, I'm doing the over justification with the doctor. You know, I'm like, you know, I, I normally ignore the pain.

It's not that bad. But now I'm here because it really hurts right now. Like you just , you just start looking, battling odd about, I promise I'm in pain.

That when I had my hysterectomy, I remember waking up and I was still in pain and the nurse was saying something to my doctor at the time and he was like, it's Heather, you can give her another dose of pain. . Like, you know, it, it's all good. She, she, yes, exactly. So, you know, good doctors are great . Um, but no one understands you.

They're, they're irreplaceable,

Yes. He retired last year and I was like, no, no, no, no, no, no.  please.

Mm-hmm.

That's awesome.

you're like, no, no, no.

Yeah.

Yeah. I've had, you know, I guess I've reached that age in the past year, my ob gyn, my primary care, my dentist have all retired, and each of those doctors I've seen. Probably over 25 years and it was like, oh my God. I, you know, even just starting with the primary, it was like the last guy has seen me since I quit my pediatrician, you know, like at age 20.

So he has 30 some years of records on me. It was like, how do I start with the new primary care explaining here's my quirky body, , and here's all the issues  it has had. Yeah, e exactly. It's like, here, sit down, relax. Let me, let me just start at the beginning. So,

yeah.

Mm.

Yeah,

you know that it affects your life and there are times it really sucks. , but it's not gonna win. I've always tried to stay, you know, in the beginning it was like, holy crap, I have this disease for forever. You know, like I said, I wasn't able to Google 8 million sites. I'm just reading all the brochures, was like, eh, am I gonna be able to have kids?

You know, I was recently, I'd only been married about two years, you know, is this gonna affect how I work my job? Like everything, um, you. That it would've been great to just hear, yeah, this sucks and there are days, weeks, clumps of time that are really gonna suck and you are gonna have interruptions. But overall, you're gonna have a good life.

You're gonna learn how to work with it. You know you're gonna learn, you're gonna learn when you go to the hospital to have your husband bring the the cushy toilet paper cuz you're not used to the single ply at the hospital. You know, you just , you just learn to work with it. You know, I. . I try to keep a really positive attitude.

I think it has taught me more empathy. I think it's taught my daughter growing up, watching with a sick parent, a lot of empathy about, you know, people with medical illnesses and invisible illnesses. So, you know, yeah, I, every now and then I'll allow myself to wallow in a little bit of self-pity because everyone needs a pity party.

Um, but I just try to, Hey, you. . I'm doing okay. You know, , I've forgot Good life. Yeah. My joints hurt and there's days where it sucks trying to get out of bed, but, you know, keep moving. So,

yeah. Sucks. But overall it's pretty good. Yeah. , exactly. No. Thank you so much.

Sounds good, . Thank you.