Dysfunction Junkies

The Dysfunction of Healthcare: When Your Body Speaks But Doctors Don't Listen

Chrisy & Kerry Season 1 Episode 31

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Have you ever had a nagging feeling something wasn't right with your body, only to have healthcare professionals dismiss your concerns as "normal aging" or "just stress"? In this deeply personal episode, Chrisy and Kerry pull back the curtain on their difficult journeys to diagnosis and the frustrating reality many patients face when seeking answers.  Join us this week as we discuss the dysfunction of healthcare.

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DJ Nick:

Welcome to the Dysfunction Junkies podcast. We may not have seen it all, but we've seen enough. And now here are your hosts.

DJ Nick:

Chrissy and Keri.

Kerry:

Welcome back, Junkies. I'm Kerry

Chrisy:

and I'm Chrissy

Kerry:

All right, Chrissy, you want to lead into what we're going to talk about today.

Chrisy:

Oh boy, this is a subject that is a tough one. It's about health and health care and how we are diagnosed yes and misdiagnosed.

Kerry:

Yes, and take forever to get diagnosed.

Chrisy:

Or led down the wrong path or told it's probably in our head or probably something else, and it's not that Right.

Kerry:

Yeah, we just felt like, especially, you know, in our age. Now, you know we're early 50s, but things happen and your body starts changing and acting not quite like it used to, and you're on that fine line of, oh, is this what aging is, or is there something else going on? So, yes, so for me, my first problem has always been I've always had some female issues. Well, we've talked about that from when I was, you know, reading in pain when I was 16, at the doctors because I was having issues, while later found out that it was my ovaries.

Kerry:

And it was years of going to the doctors, of trying to figure out what was going on. So did all these appointments and doctors after doctors, and painful months after painful months, and emergency room visits, on and on and on. They never could figure out what it was and literally I would be in the emergency room like passing out with pain, and then you know they couldn't ever figure out what it was. And literally I would be in the emergency room like passing out with pain, and then you know they couldn't ever figure out what it was, what it was, what's exactly going on, and as quick as it would come on, it would stop. Well and like, and sometimes I'd still be in the waiting room, and then it would stop and be like okay, we can go home now.

Chrisy:

Yeah. I don't know that. That's a strange occurrence.

Kerry:

I mean yeah, Well, what it turned out was is that I was having a lot of cysts on my ovaries and they were actually torsing, they were flipping, and so it was twisting and that was causing the pain. And then, as quickly as it would twist, it would twist back and then it would suddenly stop. Fine, but it took years, of years of going to the doctors and all these things to figure out what was going on. It was so frustrating and I kept saying to the doctors I'm like just take them out, just, I mean they knew it was something related with my words. I'm like, just take them out, just, I don't need them. Take, no, you're too young. You may want to have a family. I'm like not at this, you know, not at the cost of this much pain and everything. And then, finally, whenever they tours, then they were like, oh, when they figured it out, when it was actively happening they were like oh yeah.

Kerry:

Well, yeah, we should probably take those out?

Chrisy:

I seem to remember mentioning this a while back, but okay, well, better late to the party than never.

Kerry:

Exactly, and it's just, oh, sometimes, our health care system, it just is so difficult.

Chrisy:

It is just like everything else in life it's difficult.

Kerry:

What do you got going on over there?

Chrisy:

I always got something going on. My whole thing is not to harken back to something that nobody wants to remember happened.

Kerry:

Right.

Chrisy:

I'm going to say the P word right now and that is pandemic. No, she said it. I know. I'm sorry, but here's the deal with that. I mean it happened, Everybody had to deal with it. And for me telling me to have to stay home and not be around people, I mean, this is I'm not telling you anything that's going to insult you or be a surprise. I was happy.

Chrisy:

Yeah fine, perfect Right, yeah, great, no problem here, no complaints. But during that time because I am somebody who came to the parent game a little later than most people I waited to have my family. I know that it's really important, being an older parent, that I need to stay as healthy as I can for my kids, and so during that time period, I decided I was going to do what I could to make myself healthier. So I decided to start exercising Nothing crazy, I just wanted to incorporate physical fitness into my daily life. Wasn't going crazy?

Chrisy:

It was doing a bike because I do love my stationary bikes and I have a spinning bike now which I really love, and I decided to give rowing a try, yeah, which I do really like, and I do recommend rowing. It's a very just, I think, in generally I think it's a whole body workout.

Kerry:

It's awesome yeah.

Chrisy:

But it is not something at least not for me that I can commit to for a very like the bike, I can stay on for quite a really long time.

Kerry:

Yeah, if I wanted to.

Chrisy:

But the rower 15 minutes and usually that was my commitment level, but I felt it was still beneficial.

Chrisy:

Yeah, because I was doing it with the bike, yeah, so I started exercising and then I started I wasn't dieting because I'll never do that, ever again.

Chrisy:

If you listen to our diet episode, there's just no way I'm doing any of these crazy things.

Chrisy:

The only thing I did try to do and it wasn't even to any sort of extreme level but I read a lot and heard a lot this intermittent fasting, which I think everybody sort of does, kind of get thrown at them. And with my type of personality, because I do like to sort of torture myself a little bit, I don't want to say intermittent fasting is torture, but if I have to put myself off and say, okay, you're not going to eat right now, wait and then eat, and then you're done, no more eating. And it was just easy for my mind to sort of wrap it around that okay, I'm going to have this six hour window where I can, within reason, this is when I'm going to be eating. So don't eat right away and don't eat after this time. And so I was incorporating that and at my age because when that hit I was in my late forties it was working somehow. And I was told at my age it's not easy for a woman to. In general, it's hard Right.

Kerry:

But when?

Chrisy:

you're in your late 40s and you're able to somehow make the weight come off. It's amazing and I was thrilled, and so I just kept it up. It was encouraging and I kept exercising. The one thing I did notice, though, after being committed to it for so long, was for as fit as I was physically, I was not feeling the way I felt I should feel, being in better shape, yeah, and I even brought it up to my husband. I said you know, I'm really tired, I don't feel great.

Chrisy:

But you know, maybe it's because I'm old and everybody would say, well, you got young kids, you got a full time job and you're doing all this stuff, so they would sort of brush it off as right. You just got a full plate. That's why you're tired, right, and I would go to the doctors and talk to them. And you know the weight thing. They would ask because probably, if I wasn't working out right, it would have been alarming, right, With the type of weight I was losing. But when they would ask me well, what are you doing to lose this weight?

Kerry:

Yeah.

Chrisy:

I would tell them well, I work out five days a week, this is what I do, I try to watch what I eat, and I guess it probably should have sent some alarms off, because they just were like OK, well you're good job yeah. Well, they're like keep it up, yeah, keep it up, good job. And I'm like okay, so, but one day I was on my bike and I was finishing up my workout and I got a really horrible chest pain, oh no, and it shot down both my arms and I got very scared.

Chrisy:

So, I called my husband and I said I this is something I haven't experienced before. I'm scared. He said I'll be home, I'll take you to emergency. Before I'm scared, he said I'll be home, I'll take you to emergency Cause I do. I have high blood pressure, so I take medication for that. And he I really was just wanted to go to like urgent care or something but, he insisted we go to emergency Cause if with heart issues yeah, they need to do certain things that you're not going to want to have to be shifted from one place to another.

Chrisy:

So I went to emergency and they checked me in and they hooked me up to the machines and they gave me an IV and they took blood work and they took tests and they even, I think, did an MRI and all of this stuff. And I sat there for a long time and they finally came in and she said the doctor said well, everything looks really good, except your white blood cells are out the roof. Wow, and I didn't know what that meant. Right, I'm like. So what does that mean? I need to cut something out of my debt. What are you telling me? Yeah, and she said the one thing that nobody ever wants to hear oh, no, she says well, it usually means cancer. Oy, and I was thrown so hard.

Chrisy:

As if anybody who's had that word come at them in that way knows. And the one thing I used to joke about with my husband before any of this, because my husband is a lover of football and we do watch football and the one thing I hate is when the football game goes into overtime. So I used to joke with him and I used to say two words nobody in the world ever wants to hear this game's going into overtime and you have cancer, oh Christy.

Chrisy:

So now I've heard both. Oh. So they said, you know, they got me into an oncologist very quickly and I met with them and they had to do the test. Yes, because the bone marrow test where they have to take it, drill into the bone marrow. Oh, my gosh, which I laid there and whimpered like a wounded animal through the whole thing and I think and they were whole I had like two or three like women holding me down.

Chrisy:

This may be everyone's experience with this, I don't know. I stayed still, but it's not a pleasant experience. But I made it through that and the oncologist was hoping it was a specific type of leukemia that he felt was fairly manageable yeah, if I was at the point where it could be managed. So after all the tests and everything like that, he did confirm that it was this type of leukemia called CML. Ok, chronic, don't make me say the middle thing, leukemia.

Kerry:

Chronic leukemia Right.

Chrisy:

And so I just remember leukemia from the past usually meant like bone marrow transplant or something like that, yeah. But science has come to the point where things have changed so much, yeah and you ever hear the term. They're like, oh, if you're going to get cancer, this might be the type you might want to get.

Kerry:

Not that you ever want to get anything.

Chrisy:

But it's managed with medication. Okay, and so, because of course your head right away goes to chemo radiation, you get cancer.

Chrisy:

Those are the two things you feel go hand in hand. So I have been lucky, good that I have been able to try and work on this, uh, with medication with minimal side effects. There are side effects, right, but minimal. And then the selfish part of me I'm gonna be disgraceful because I have to be in every episode disgraceful. My concern was, and I asked the doctor are you was cancer and not this? I mean, what's going on here, did I not? And he said look, he's like you lost a lot. I mean because I did, and everybody's like this.

Chrisy:

Then he kept saying I thought I looked great. You do look great. Well, I look really great Because you don't want to talk about cancer and say it.

Chrisy:

But I look good, don't I? For cancer, hi me, cancer and me. We go hand in hand and we look good. But he said no. He said you know the majority of that weight loss from what you tell me you were doing, it was you right. But he said probably the last so many pounds, yeah, was probably this kicking in? So we've been able to fairly manage it. Yeah, and I'm optimistic and I feel fine and you got to move on and that's that. But let me tell you one thing though, because I want to warn my people, junkies out there, with this One of the reasons, some of the side effects or not side effects, the signs that this could have been the CML that I was experiencing but I was getting brushed off with, was. It was weird because I did work out a lot. I didn't sweat a lot for as much as I was working out, but I was getting. I was sweating in the middle of the night.

Kerry:

Oh, night sweats Like crazy I would wake up drenched?

Chrisy:

Wow. And what do they think when a woman is in her late 40s or 50 years old? What is that?

Kerry:

Menopause Right.

Chrisy:

And so that. I kept getting that conclusion when they would say are you experiencing any?

Kerry:

of this.

Chrisy:

Well, yes, I am, once they got my blood work back in where it needed to be. I have not had any of that and do you sweat when you work out. Now I do.

Kerry:

Yeah, I do.

Chrisy:

It's sort of so. Yeah, I don't want everybody who's my age, a woman who is experiencing. I sweat all of a sudden, think that you have cancer. Right, but it was just a weird no.

Kerry:

But the point is that you listen to your body. You knew something wasn't right, you felt that something wasn't right, but every time you would bring up the symptoms it was kind of dismissed of oh it's menopause, oh it's this, oh, you have kids.

Chrisy:

Oh you're, you know, instead of oh yeah, they had an excuse for everything Exactly and it sounded all logical to me which basically made me not even worry about second guessing it.

Kerry:

Correct, and that's exactly one of the things that I went through I had for years, I mean for the past.

Kerry:

Well, honestly, since I was in my 20s it actually started, I would have these all these weird unrelated things. So when I was working at a major theme park and was doing a lot of scuba diving in very cold water, I would have these things where I would come out of the water for the whole rest of the day, my hands they would be like dead white. Like dead white, but only like you could draw a line almost across my hand where my fingertips and everything were just completely white, and then, like right about the knuckle, it'd be normal, I mean, it was the craziest thing. And then they would say, oh well, it's, that's called Reynolds syndrome and it's just that, and it was, you know, okay, whatever. Then, you know, a couple years later, I was having all kinds of problems where I was just so tired, so tired, all just constantly fatigued. Oh well, you know you probably have oh gosh, I can't think of it now, but it was what you get when you have chickenpox, can't think of the name of it right now.

Kerry:

Oh well, if you have chickenpox virus and you can get, then this other thing.

Kerry:

The shingles, not shingles, but it's oh gosh, I can't believe. I can't remember the name of it right now, but again they pass it off. It's like, oh, it's just a kid, you always have that virus in your system and it's just flaring up and it's just that. And so it was like one thing after another, all these things, and this is like no. And I kept saying no, something is not right, something is not right. Then I would have I had these episodes where I had all this pain in my joints. Oh, they send me to a neurologist, send me. They kept sending me all these specialists and everything was coming out fine. Oh, no, you're fine. It's like I'm not fine, I'm telling you something is not fine. But it was like not, it was all these unrelated little things that they kept passing it off, passing off. Finally, I found this doctor in Las Vegas when we were living there and he was so sweet, he was this good old country doc, and he actually sat and he listened and he listened to all of these and he said you know, I think this might be lupus. It was like it made sense, you know, like when you start looking into it and how it's so hard to diagnose and everything. Just starting to go through all that with him and finally be like, okay, now we might know, you know, so we're gonna have to go to the rheumatologist, all this other stuff.

Kerry:

Well then, we moved here to Ohio, had a little bit of setback in in getting healthcare. Well then, in 2018, I went to the eye doctor for my yearly eye exam and the eye doctor was looking at my eyes and he was like there's something I want you checked at Cleveland Clinic. I want you to go up there. I want them to look at your eye. I'm not sure if what I'm seeing is what I'm seeing, but you know I need to look at a specialist.

Kerry:

So I went to a specialist up at Cleveland Clinic and I'm huge advocate of Cleveland Clinic. Thank you so much. I love you guys all up there, beth, health system in the world. So, any case, went up there and while they were trying to do an ultrasound of my eye to see what this retina issue that they thought I was having, it was the most painful experience. I mean, I was just in so and I have a very high pain tolerance, really high pain tolerance but I was just like tears running down my face and they're like looking at me going. This eye ultrasound does not hurt, like you shouldn't be in pain.

Kerry:

And I'm like well it is painful. Well, here there was a gland in my eye that was really swollen, and when they were doing that ultrasound it was touching that and whatever. So then that finally led them going. We think you have something. I ended up being fine. What my eye doctor originally thought was wrong was nothing was wrong.

Chrisy:

It was fine it was just an anomaly.

Kerry:

That's in my eyes, because of this glam, they sent me to rheumatology. Another six months later, go through to rheumatology, they were like, oh, you have lupus. And it was like, okay, we've thought this. My other doctor thought this. But again, getting a doctor to listen to you, you know, and then they finally had that happen with my eye, that it was actually something physical that they could kind of see. That allowed them to go this other route, got me on medication and you know, yes, I still have lupus and I definitely it's something I manage with every day, but the medication is just been life changing.

Kerry:

But I know what you mean. It's hard whenever your symptoms are dismissed, you know. So now it's like living with lupus is? I find it a lot at the gym, you know I've mentioned before I go to orange theory, we do running, rowing and the floor and you can start in different orders depending on the class, but I always do that order running, rowing on floor because by the time I get to the floor I'm shot like that's. It's very intense and then even doing this running the marathon, I have to give myself a pass on. It's okay, I'm not going to be the first one across the line. Hopefully won't be the last one across the line, but I allow myself that it's okay not to push myself. You know. It's okay because I have this and I'm mitigating it and I'm dealing with it. Gosh, it took so long, so long.

Chrisy:

Now with lupus, when they finally did realize what it was if you had somebody early on that would have said you know, I'm thinking it might be this. Is there a test for that? Through blood test, or how do they? How is that diagnosed usually?

Kerry:

It's hard because there's no hard and fast. Oh, we can do this one test and this is what you got. There are tests that you can have that will like, and I I honestly I don't know all the names for everything, but there are certain tests that you could be negative or positive for, and if you're positive it could mean you have lupus. But positive people don't necessarily have to have it. So it's really an accumulation of symptoms, specific tests, you know they can tell by different blood work when you have flares, you know how you know so, and for me it affects my muscles, my joints and my kidneys. So the type of lupus I have SLE lupus, and so they have to really monitor my kidneys because long term it could really cause havoc with that. So, and I'm always borderline, but for me the biggest thing is the muscle weakness, the muscle tiredness, pains in my joints, inflammation in certain glands and stuff.

Chrisy:

So is there a specific type of things they tell you to stay away from that may flare up, like maybe dietary needs that you need to watch, or, well, take more you know interest in?

Kerry:

the thing that hurts me the most is the sun no, I'm not kidding, that is a cruel. Isn't that cruel for the sun lover? Beach lover. Always want to be outside person, like me.

Chrisy:

Yes, the sun is my worst enemy is there, I is there, I'm just because I'm totally unaware of any, the understanding of this. I mean, I know, I've heard of lupus, of course, but so why? Why is the sun such a problem?

Kerry:

Okay, this is getting into where I'm a very bad lupus warrior, because I don't know. I can tell you the genetics of all of that and why you can give me the parochial school version.

Chrisy:

it's good for me.

Kerry:

Basically, the photosensitivity is definitely a big thing and being out in the sun it just exasperates it. My rosacea will flare up often if I'm in the sun I'll get so tired. It's like brain foggy from when I'm out in the sun too much and the joints hurt and everything. So when I'm at the beach and again we travel to the Caribbean a lot, you will see, I'm very careful about how much I'm in the sun. I make sure I have a lot of shade. I wear the rash guards that are the UV protective clothing, so I try to mitigate that. And the friends that we travel with are so great because they're very watchful of me too.

Kerry:

And that's actually one of the reasons why I kind of lost a friend is because it was when I was in the early stages of getting diagnosed with lupus and we were on vacation with friends and I was having one of my worst flares ever. We were just early getting diagnosed and it was like, well, they didn't understand. Well, what do you mean? You have to go take a nap early getting diagnosed? And it was like, well, they didn't understand. Well, what do you mean? You have to go take a nap, you know, or what do you mean you can't do this. Well, we wanted to go to dinner and why? And it was just like I was really sick and my lupus was interrupting their vacation. It's just like it really showed me true colors on that friendship, and it was really after that that I'm like yeah, I don't think you're really my friend.

Chrisy:

You know I would have appreciated you, because if I'm told I don't care vacation or not that you know I need to take a nap because I'm not feeling great, I'm like you know what. That's a great idea, carrie.

Kerry:

I'm going to take a nap too, yeah.

Chrisy:

I'm all for planning naps during vacation.

Kerry:

I love a good nap and I used to feel bad about, I used to get mad it myself and I felt like you know I was being lazy or I didn't want to be perceived as that because you know I do need, I do need rest, I do need that. And now it's like nope. And, like I said, our good friends that we travel with you. That went to Friendsgiving with Heather and Andrew, the pleasure of getting to meet these lovely people. They know I'm like OK, yep, nap time for kiri, that's so good, because you just really need to be in tune.

Chrisy:

Yeah to, I mean I, I, I'm glad that?

Kerry:

yeah, that's awesome. How has the support for you been when you got diagnosed with your cancer?

Chrisy:

uh, support. I don't know the doctor supports me on my appointments oh, dj nick just sat back across his arms.

Kerry:

I don't how do we define support? Well, because that's just an emotional thing whenever you're given a long term health diagnosis like that. So how has I mean? First of all, I want to say I so appreciate with how vulnerable you are being today. I know that you you like to joke around, you like to laugh and everything, but you've really opened up today and talked about something very personal and very vulnerable.

Chrisy:

So it is personal and I don't normally want to talk about it because in my mind, probably if I don't talk about it then it doesn't exist, type of thing too, but it does. Well, I too will go out and say thank you to Cleveland Clinic when we moved here. The Cleveland Clinic has actually got a fairly strong presence here, which is nice.

Chrisy:

I think they are actually starting to move into the area where you are still yeah a little bit, a little bit, and so that level of confidence in what I'm being offered for care is helpful, yeah, so when you get that kind of diagnosis, they do make sure they have people who reach out to you to answer questions, ask you how you're feeling. It's like for the first year in your care. They're really strong and they give you, of course, lots of things, outlets, that you can look into if you need it. Family my husband yeah, I don't know to what level my mother understands right, she knows I have it. Yeah, she's my mom, like she sort of was with. Uh, yeah, you know. Okay. Yeah, that's good, chrissy, you'll manage it.

Chrisy:

Yeah I mean I don't want to make her sound that cold well, no I think because she's older, yeah, and she does have some memory issues, right, not that she doesn't, she doesn't forget, but and I don't like to really push it at her right and told some other family about it and they you know reach, I, I guess, and I wouldn't say that all the blame is on them. They probably understand I'm a type of person who I mean, yes, let me know. Hey, I heard you have this right. I'm sorry about that and offer me the. You know, if you ever need anything right, which I appreciate right, have this right. I'm sorry about that, and offer me the. You know, if you ever need anything right, which I appreciate right, chances are. But I think they kind of know the type of person I am.

Chrisy:

If I didn't have such a strong husband, yeah, who's gonna take care of everything for me as long as I look to him and he says it's gonna be okay, then you're that's the only word that I believe in right, I know other people believe in other things. I believe, in the world, according to Nick.

Chrisy:

The world, according to Nick. Yeah, so and I do usually put the pressure on him for all kinds of situations Please tell me this is going to be okay, right, yes, and I almost forced him because I my in my mind, if he says it'll be fine, it will be, it will be. Yes. I should probably take stats on whether or not that's always come through. I am not sure.

Kerry:

I bet you it has.

Chrisy:

I feel like it has yeah.

Kerry:

Having a good spouse is huge. It really is In our situation. I was diagnosed with cancer very early on in our marriage. I remember that yeah, I mean he had stage four colon rectal cancer. Oh boy, and that was a long battle, oh sure. So I know what you mean when you're there for each other, but the biggest thing I can say is it's made our relationship stronger. It's made it better, you know. But I know what you mean, like it's going to be okay because we have each other, right, yeah, so Yep, it is.

Chrisy:

But everybody, please, if anything comes out of this that Carrie and I would both tell you is to know your body, know how you feel. Don't back off with your medical team general doctors, any type of doctor and if they don't come up with anything for you and they kind of brush you off, remember you have the right to a second opinion or a third.

Kerry:

maybe I don't know and don't ignore symptoms. No, you know, that was the biggest thing with Jim. He ignored his symptoms for so many years and it was literally the strangest thing how it all happened. We'll talk about that on another episode. But he ignored his symptoms to the point that he, you know, another month he would have been dead.

Chrisy:

Oh my gosh yeah.

Kerry:

So he is a big avid of don't and it's embarrassing sometimes to talk about things you know and what's going wrong with your body. You know, so, but talk to your doctors. Don't ignore the symptoms and don't let them ignore your symptoms when you tell them about it, don't let them sweep it under.

Chrisy:

If you feel like it's something wrong, you keep pushing it. So, yeah, yeah, usually say something that's going to really catch their attention. First like something horrible and say now you have to pay attention to me. I'm going to tell you this. You need to listen to what I'm going to say, and then you can tell me I'm not in the right place or I am, yeah. Yeah, make sure you get their attention. Absolutely Not, not any time to be shy when it comes to your health.

Kerry:

No, because we need you out there listening to us. That's right.

Chrisy:

I don't want to hear about anybody not feeling good out there.

Kerry:

So get to their doctor and tell them to get you on the straight path to feeling good every day.

Kerry:

Hey, but if you want to reach out to us, you know you can even reach out to us privately. Chrissy and I love to hear everyone's stories and you know, maybe this helped you go see the doctor or helped your family members, or just if you want to share your story, please feel free to reach out to us. You can reach out to us on our Facebook page, send us an instant message. Heck, you can even send us a Gmail. All of that's on our website, dysfunctionjunkiesbuzzsproutcom, and we will see you next week. Bye, everybody, bye, stay healthy. We will see you next week. Bye everybody, bye, stay healthy.

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