WEBVTT - Case #23: Mik 0:00:09.680 --> 0:00:12.680 I remember having my friends drive me to the er 0:00:12.840 --> 0:00:16.119 once and someone had to carry me into the er 0:00:16.200 --> 0:00:17.720 because I could not even move. 0:00:18.440 --> 0:00:22.319 The severity of the pain is not necessarily correlated with 0:00:22.400 --> 0:00:25.160 the type of disease or like the extent of the disease, 0:00:25.320 --> 0:00:27.240 so then people don't get the support that they need. 0:00:27.600 --> 0:00:28.240 They feel like. 0:00:28.200 --> 0:00:29.560 They're the only one going through it. 0:00:30.160 --> 0:00:33.960 She'd say, I cannot live with these symptoms all the time. 0:00:34.159 --> 0:00:38.240 I just want to live a quote unquote normal life. 0:00:38.320 --> 0:00:43.000 I was at a loss, like I'm looking down and 0:00:43.040 --> 0:00:46.479 I'm seeing red and no one's helping me. 0:00:53.400 --> 0:00:57.000 How terrifying would it be to fight an unknown enemy, 0:00:57.520 --> 0:01:01.360 one you didn't recognize and didn't see coming. What if 0:01:01.360 --> 0:01:05.440 that enemy was coming from within a disease that even 0:01:05.560 --> 0:01:11.280 doctors couldn't identify. Nearly half of all Americans suffer from 0:01:11.319 --> 0:01:16.000 some chronic illness, and many struggle for an accurate diagnosis. 0:01:17.080 --> 0:01:23.440 These are their stories and Lauren brete p Cheko and 0:01:23.600 --> 0:01:41.800 this is symptomatic. Mick naturally radiates energy, joy, and warmth 0:01:42.160 --> 0:01:45.559 with her lively, outdoorsy spirit. She makes everyone she meets 0:01:45.600 --> 0:01:48.840 feel like family. These qualities not only carried her through 0:01:48.880 --> 0:01:52.160 her toughest health challenges, but also help her make a 0:01:52.320 --> 0:01:56.360 real impact in the lives of others. For people who 0:01:56.400 --> 0:01:59.200 don't know you, tell me a little bit about yourself. 0:01:59.240 --> 0:02:00.560 How would you describe yourself. 0:02:01.240 --> 0:02:03.640 I feel like I'm a jack of all trades, but 0:02:03.920 --> 0:02:08.560 mainly I'm a social media creator. I started as a 0:02:08.600 --> 0:02:13.240 fitness coach on Instagram and YouTube, and then I shared 0:02:13.280 --> 0:02:17.480 my eating disorder recovery online, and then I started sharing 0:02:17.600 --> 0:02:19.280 my health issues. 0:02:18.880 --> 0:02:21.320 Online and gained a community from that. 0:02:22.000 --> 0:02:24.919 Well, when you're not doing social media, tell me some 0:02:25.000 --> 0:02:27.720 of your favorite things to relax, and I'm sure they 0:02:27.760 --> 0:02:29.200 may include your dog Blue. 0:02:29.520 --> 0:02:32.840 Oh, yes, they do well. Blue just got surgery. He 0:02:33.040 --> 0:02:36.680 got doggy acl surgery. But usually it would be taking 0:02:36.720 --> 0:02:40.120 him for hikes or like walks and stuff. And I'm 0:02:40.160 --> 0:02:44.040 a big rock collector, fossil collector. My family has a 0:02:44.040 --> 0:02:47.920 house in northern Michigan, and if anybody knows what a 0:02:47.919 --> 0:02:50.960 Potoski stone is, I'm always like polishing them in my 0:02:51.000 --> 0:02:55.040 backyard and showing my nieces and nephews all of the 0:02:55.040 --> 0:02:56.080 cool stuff that I find. 0:02:56.720 --> 0:02:59.840 For people who don't know, Mick, how would you describe 0:02:59.840 --> 0:03:00.560 for to people? 0:03:01.240 --> 0:03:05.040 Oh, gosh, there's six of us siblings, so Mikayla is 0:03:05.960 --> 0:03:07.560 the fifth. 0:03:08.280 --> 0:03:10.600 That's Christine mix older sister. 0:03:11.240 --> 0:03:14.040 She's more on the quiet side since there's so many 0:03:14.080 --> 0:03:16.239 of us, somebody's always trying to talk and over talk 0:03:16.360 --> 0:03:21.520 to each other. She's very thoughtful, she's a very genuine person. 0:03:22.320 --> 0:03:23.240 She's just a gem. 0:03:23.360 --> 0:03:24.600 She's really really special. 0:03:25.240 --> 0:03:29.560 Christine, a nurse practitioner, has always been mixed anchor. As 0:03:29.560 --> 0:03:33.520 an older sibling. She recalls mixed struggling with unusual health 0:03:33.560 --> 0:03:37.240 issues from an early age. Do you remember how early 0:03:37.360 --> 0:03:39.960 now looking back, the staff infection issue started. 0:03:40.520 --> 0:03:42.760 I mean, kids fall all the time, right like they're 0:03:42.760 --> 0:03:46.840 always getting abrasions, knees, palms of their hand. But I 0:03:47.120 --> 0:03:50.960 vividly remember her as a little toddler getting one and 0:03:51.480 --> 0:03:53.920 my parents were like what in the world, and a 0:03:54.080 --> 0:03:56.800 lot of antibiotics. I mean, she'd get poked by like 0:03:56.840 --> 0:03:59.360 a pine needle or something and it would turn into 0:03:59.400 --> 0:04:00.760 a staff infection. 0:04:01.440 --> 0:04:04.720 Health issues that seemed to evolve as Mit grew older. 0:04:05.360 --> 0:04:10.880 I started hitting puberty in elementary school way before a 0:04:10.920 --> 0:04:14.720 lot of people my age did, and my parents kind 0:04:14.720 --> 0:04:17.520 of freaked out and took me to a bunch of doctors. 0:04:17.800 --> 0:04:21.120 So I didn't find that out until probably a few 0:04:21.200 --> 0:04:21.680 years ago. 0:04:22.400 --> 0:04:24.760 That's interesting, And what did they chalk that up to 0:04:24.800 --> 0:04:27.760 the fact that you had so many female siblings that 0:04:27.880 --> 0:04:29.400 sometimes the hormones just sink. 0:04:29.920 --> 0:04:32.719 I don't think they gave my parents any answers, if 0:04:32.760 --> 0:04:35.920 I remember correctly. I think they just chalked it up 0:04:35.920 --> 0:04:38.159 to me hitting puberty early. 0:04:39.400 --> 0:04:43.000 Little signs of mixed health issues appeared early on, but 0:04:43.279 --> 0:04:46.679 it wasn't until she started to menstrate that suspicions began 0:04:46.760 --> 0:04:47.200 to rise. 0:04:48.560 --> 0:04:52.039 I remember my first period was between three weeks and 0:04:52.080 --> 0:04:54.240 five weeks long. I can't remember exactly because I was 0:04:54.279 --> 0:04:58.599 so young, but I asked my mom, and I asked 0:04:58.640 --> 0:05:01.040 my siblings. I was like, is this normal? And they 0:05:01.040 --> 0:05:04.359 were like, yeah, sometimes it happens. My mom had heavy 0:05:04.400 --> 0:05:08.880 periods and she was like, I'm fine. And unfortunately, we've 0:05:08.880 --> 0:05:11.240 been taught that a lot of things are normal that 0:05:11.320 --> 0:05:13.400 aren't at all. 0:05:13.480 --> 0:05:17.680 And so was that difficult now looking back going through 0:05:17.680 --> 0:05:18.840 that at such an early age. 0:05:19.920 --> 0:05:26.000 Yes, because when I hit puberty in elementary school, I 0:05:26.040 --> 0:05:29.360 dealt with a lot of acne and struggles with acne 0:05:29.520 --> 0:05:33.880 very young, and I remember like carrying a pot concealer 0:05:34.000 --> 0:05:37.599 around with me in literal elementary school because I was 0:05:37.640 --> 0:05:41.160 so worried about what people would say, and I even 0:05:41.200 --> 0:05:43.760 wore like swim shirts around whenever I would go to 0:05:43.760 --> 0:05:45.920 the pool because I had acne all over my back 0:05:46.000 --> 0:05:47.400 and chest and arms. 0:05:48.000 --> 0:05:52.160 I hadn't even thought about, of course, the hormonal aspect, 0:05:52.200 --> 0:05:54.520 and if your body's being flooded with that early, you're 0:05:54.560 --> 0:05:57.440 going to manifest what most kids are going to navigate 0:05:57.800 --> 0:06:01.520 in junior high in high school in terms of acne. Yeah, 0:06:01.640 --> 0:06:03.200 that must have been a lot. 0:06:03.400 --> 0:06:04.480 It was, for sure. 0:06:05.120 --> 0:06:09.920 She was on medications for the acne, and again she 0:06:10.040 --> 0:06:13.480 was young. You don't go searching for other problems at 0:06:13.480 --> 0:06:17.000 that time because the majority of your peers are also 0:06:17.200 --> 0:06:20.920 going through that. Hers was just taken to the next level. 0:06:21.760 --> 0:06:25.120 And so the symptoms persisted. Now in high school and 0:06:25.279 --> 0:06:28.799 a standout on the soccer team, mixed minstrel cycle began 0:06:28.880 --> 0:06:30.599 to disrupt her everyday life. 0:06:31.680 --> 0:06:34.920 I remember being in the middle of a game and 0:06:34.960 --> 0:06:38.440 having to run off the field to change my super 0:06:38.520 --> 0:06:42.400 plus tampon. Like I had to change these tampons at 0:06:42.480 --> 0:06:43.520 least three times an hour. 0:06:43.640 --> 0:06:44.800 It was so heavy. 0:06:45.400 --> 0:06:48.440 She is an incredible athlete. She had to retire from 0:06:48.480 --> 0:06:52.200 her soccer career pretty early. Earlier than she wanted, because 0:06:52.680 --> 0:06:55.840 she blew her knee out several times and had some 0:06:55.920 --> 0:06:59.400 major surgeries on the knee and then ended up getting concussions. 0:07:01.320 --> 0:07:05.799 So now, on top of the symptoms piling up, your 0:07:05.920 --> 0:07:09.000 body must have been sent through a spiral going from 0:07:09.000 --> 0:07:12.720 all that time playing soccer to now not having it 0:07:12.760 --> 0:07:13.720 at all. 0:07:13.760 --> 0:07:17.360 I was really confused because I was so athletic, and 0:07:17.400 --> 0:07:19.480 then all of a sudden, I didn't even know how 0:07:19.480 --> 0:07:22.320 to work out, and I didn't know how to do anything. 0:07:22.360 --> 0:07:26.640 I didn't know how to eat, I couldn't really socialize. 0:07:26.680 --> 0:07:28.400 It was hard for me to put myself out there 0:07:28.520 --> 0:07:31.360 because all of my friends and my whole entire life 0:07:31.400 --> 0:07:37.800 surrounded soccer, and so I essentially had to step into 0:07:38.040 --> 0:07:43.160 this very unfamiliar life that I did not know how 0:07:43.200 --> 0:07:44.120 to live at all. 0:07:45.000 --> 0:07:48.600 Over time, Mick started to feel lost in her own body, 0:07:48.960 --> 0:07:52.520 turning to fad diets and facing the pressures that often 0:07:52.640 --> 0:07:53.400 accompany them. 0:07:54.560 --> 0:07:57.400 My parents thought it would be good for me to 0:07:57.480 --> 0:08:04.200 dive head into something that would take discipline, because I 0:08:04.320 --> 0:08:08.480 was an athlete, like I loved having something to put 0:08:08.480 --> 0:08:13.080 my energy into and to see progress in. And that's 0:08:13.240 --> 0:08:16.200 exactly what I did, except it took. 0:08:16.080 --> 0:08:18.400 A very wrong turn. 0:08:18.840 --> 0:08:22.200 I was turning seventeen at the time, and I was 0:08:22.880 --> 0:08:27.280 following a diet that was having me eat less than 0:08:27.280 --> 0:08:28.720 a toddler should be eating. 0:08:29.720 --> 0:08:32.920 Mick was developing an eating disorder that would soon consume 0:08:33.000 --> 0:08:36.840 her life, adding to the stress from the mysterious undiagnosed 0:08:36.880 --> 0:08:41.800 illness that continued to linger in the background. How did 0:08:41.880 --> 0:08:46.040 your symptoms then progress to the point where you realized 0:08:46.160 --> 0:08:49.520 that you needed to seek medical opinion. 0:08:50.240 --> 0:08:56.920 Well, my acne got exponentially worse, and I also started 0:08:56.960 --> 0:09:03.160 getting UTIs right after my big life shift. I also 0:09:03.400 --> 0:09:07.319 remember getting a happy trail on my lower stomach and 0:09:07.679 --> 0:09:10.760 getting some hairs on my chest, in my chin and 0:09:11.240 --> 0:09:16.120 in the mustache area, and my sisters also dealt with 0:09:16.160 --> 0:09:17.120 that to some extent. 0:09:17.200 --> 0:09:19.200 So I was like, Okay, Like, I guess I'm just 0:09:19.240 --> 0:09:20.040 going to keep going. 0:09:20.240 --> 0:09:24.120 That is just the genetic Yeah, you know card you 0:09:24.160 --> 0:09:24.680 were dealt. 0:09:25.240 --> 0:09:28.440 Yeah, And so I kind of lived in that cycle 0:09:28.520 --> 0:09:33.120 for a fairly long time, being on antibiotics for acne, 0:09:33.640 --> 0:09:37.360 trying different birth controls because I was starting to get 0:09:37.400 --> 0:09:42.240 sexually active, so I was actually suppressing my period around 0:09:42.240 --> 0:09:46.480 that time as well, and I was shaving all of 0:09:46.480 --> 0:09:50.080 the hair that wasn't normal for a girl to have 0:09:50.559 --> 0:09:53.440 in you know, social society standards. 0:09:54.240 --> 0:09:58.080 How did your UTIs progress to the point where they 0:09:58.120 --> 0:09:59.960 became emergency situation? 0:10:01.240 --> 0:10:07.080 Honestly, they were always emergency situations. It hit me so badly. 0:10:07.480 --> 0:10:08.120 I would be. 0:10:08.200 --> 0:10:11.120 Fine one minute and then I wouldn't be able to 0:10:11.160 --> 0:10:13.520 walk the next. So I actually went to the emergency 0:10:13.600 --> 0:10:17.679 room quite a bit. I remember I was sitting in 0:10:17.720 --> 0:10:23.160 my bedroom at my house and I was watching TV, 0:10:23.520 --> 0:10:26.840 and it hit me so fast, and I told my 0:10:27.040 --> 0:10:30.360 parents and they were like, oh, yeah, like it'll go 0:10:30.440 --> 0:10:33.480 away on its own, you know, like Grandberry juice. Yes, 0:10:33.559 --> 0:10:35.880 this stuff happens all the time. And so I after 0:10:35.960 --> 0:10:40.560 about an hour. My first emergency room visit was me 0:10:40.760 --> 0:10:41.800 driving myself there. 0:10:42.400 --> 0:10:44.440 So then she just kind of ignores it because she's 0:10:44.480 --> 0:10:46.040 just like, well, this has to be my norm. I 0:10:46.040 --> 0:10:48.640 guess I'm just going to live with bladder pain and 0:10:48.800 --> 0:10:50.360 puts it off, puts it off, and then it just 0:10:50.440 --> 0:10:52.120 gets worse, and that's when she has to go to 0:10:52.160 --> 0:10:54.480 the emergency room because she's like, well, this is terrible, 0:10:54.960 --> 0:10:55.640 so painful. 0:10:56.520 --> 0:11:01.760 That's why they immediately gave me antibiotics every single time, 0:11:01.880 --> 0:11:06.080 without even doing a culture test because my symptoms were 0:11:06.120 --> 0:11:10.120 so severe, I was either urinating blood or like I 0:11:10.240 --> 0:11:11.760 was screaming in pain. 0:11:11.840 --> 0:11:16.840 It was so painful for somebody who can't understand or 0:11:16.920 --> 0:11:21.439 hasn't experienced. Can you just explain in as much detail 0:11:21.440 --> 0:11:23.600 as possible what that pain felt like? 0:11:24.720 --> 0:11:25.520 Oh? 0:11:25.720 --> 0:11:30.200 How do I explain the most excruciating pain? I mean, 0:11:30.280 --> 0:11:33.840 you can't think. You can't walk. It feels like knives 0:11:33.840 --> 0:11:36.560 are coming out of you. When you're peeing. It feels 0:11:36.640 --> 0:11:42.320 like you have nothing else to pee, but you have to, 0:11:42.640 --> 0:11:47.440 and your body needs to. And your body is so swollen. 0:11:47.720 --> 0:11:52.520 Your lower abdomen is so swollen it feels like stabs. 0:11:52.640 --> 0:11:53.360 It really does. 0:11:56.120 --> 0:11:59.600 By now, Nick is twenty and four years into a 0:11:59.640 --> 0:12:03.160 more search for answers, finding herself in and out of 0:12:03.200 --> 0:12:08.000 the er as her symptoms continuously flared. She started seeing specialists, 0:12:08.160 --> 0:12:11.480 hoping for the relief she needed, but no one could 0:12:11.480 --> 0:12:14.559 seem to uncover the real root of the problem. 0:12:15.080 --> 0:12:20.720 And by that time, my bladder issues started to get 0:12:20.960 --> 0:12:22.160 exponentially worse. 0:12:23.080 --> 0:12:24.240 I was unable to walk. 0:12:24.320 --> 0:12:27.319 I remember having my friends drive me to the er 0:12:27.480 --> 0:12:31.000 once and someone had to carry me into the er 0:12:31.040 --> 0:12:32.760 because I could not even move. 0:12:33.440 --> 0:12:35.400 What are you being told it could. 0:12:35.120 --> 0:12:38.959 Be PCOS and inner social cystitis. 0:12:39.760 --> 0:12:45.400 Okay, so polycystic ovarian syndrome, And what are you being 0:12:45.520 --> 0:12:46.559 told to do? 0:12:47.400 --> 0:12:52.400 Girth control and elimination, diet and bladder medication. 0:12:53.200 --> 0:12:56.520 But I just find something heartbreaking, Mick about the fact 0:12:56.559 --> 0:13:02.400 that when you went to your gynecologist to on contraceptives, 0:13:03.000 --> 0:13:08.640 you didn't talk about the hair and the cycle issues, 0:13:09.640 --> 0:13:12.560 and then you go to an intercrinologist and you're not 0:13:12.760 --> 0:13:16.160 talking about the gynecological issues. 0:13:17.160 --> 0:13:19.160 I think a lot of it has to do with 0:13:19.559 --> 0:13:24.920 being self conscious and overwhelmed, because at this time I 0:13:25.000 --> 0:13:27.800 was starting to gain my independence. I was in college 0:13:28.240 --> 0:13:32.640 and I was going to these appointments alone. I remember 0:13:32.679 --> 0:13:35.080 being so nervous, to the point where I would leave 0:13:35.120 --> 0:13:37.640 appointments and kind of forget something. But then I would 0:13:37.640 --> 0:13:40.000 be like, oh, you know, like it's fine, it doesn't matter. 0:13:40.640 --> 0:13:42.840 So you know that something's wrong, you just don't know 0:13:42.880 --> 0:13:46.400 how to advocate or articulate your issues. 0:13:46.960 --> 0:13:50.320 Yes, it kind of just felt like I was in 0:13:50.360 --> 0:13:54.280 and out of those doctor's appointments. But after every doctor appointment, 0:13:54.280 --> 0:13:56.479 I would kind of leave with some sort of confidence 0:13:56.520 --> 0:14:00.440 that like, it wasn't as bad as I thought it was. 0:14:02.400 --> 0:14:07.560 With possible PCOS and interstitial cystiitis diagnosis already on the table, 0:14:08.080 --> 0:14:12.440 Mick visits a gastro entrologist who notes her bladder frequency 0:14:12.559 --> 0:14:17.360 and pain, ultimately diagnosing her with IBS, a label often 0:14:17.400 --> 0:14:20.040 given when no other clear cause for a GI issue 0:14:20.040 --> 0:14:23.640 was found. Meanwhile, as her symptoms piled up and she 0:14:23.760 --> 0:14:27.960 transitioned into college life away from home, Mick began sharing 0:14:28.000 --> 0:14:32.080 her fitness and diet routines online, quickly gaining a following 0:14:32.280 --> 0:14:36.320 and praise for her physical appearance. What her followers didn't 0:14:36.400 --> 0:14:38.840 know was that she was also in the grip of 0:14:38.880 --> 0:14:42.800 an eating disorder, and their comments only fueled that struggle. 0:14:43.760 --> 0:14:47.760 And so you're navigating things that are affirming your negative 0:14:48.680 --> 0:14:49.400 sense of self. 0:14:50.200 --> 0:14:53.720 Yes, And that was when social media had just started 0:14:53.960 --> 0:14:58.040 to blow up, So it was literally the perfect storm 0:14:58.120 --> 0:15:02.040 for everything wrong to happen. I started posting online and 0:15:02.240 --> 0:15:07.920 gaining positive feedback, and on the inside I felt so 0:15:08.840 --> 0:15:14.400 lost and confused, and all I could do was follow 0:15:14.560 --> 0:15:16.840 the positive feedback that I was getting. 0:15:17.520 --> 0:15:20.680 I mean, you're going through all of this at such 0:15:20.720 --> 0:15:26.040 a young age. You said that just managing your UTIs 0:15:26.080 --> 0:15:29.720 alone felt like a full time job. You must have 0:15:29.800 --> 0:15:36.720 been so psychologically not just exhausted, but detached from yourself. 0:15:37.880 --> 0:15:38.160 Yes. 0:15:38.720 --> 0:15:43.800 And I was so focused on trying to make myself 0:15:44.120 --> 0:15:50.280 smaller that I wasn't focused on the pain of my body. 0:15:50.560 --> 0:15:55.200 I wasn't focusing on my digestion. I was focusing on 0:15:55.440 --> 0:15:58.520 limiting my calories, going to the gym for hours a day, 0:15:58.600 --> 0:15:59.320 twice a day. 0:16:00.120 --> 0:16:03.040 But at this point in time. 0:16:03.800 --> 0:16:09.560 I also noticed my body swelling to an amount that was. 0:16:09.600 --> 0:16:12.640 Not normal in what way and how. 0:16:13.200 --> 0:16:15.600 So this is interesting because at the time I was 0:16:15.640 --> 0:16:19.160 dealing with binge eating disorder. So in high school, when 0:16:19.200 --> 0:16:23.080 all of these things started happening, I had orthorexia and 0:16:23.120 --> 0:16:26.320 then it kind of went into bolimia and then binge 0:16:26.320 --> 0:16:27.200 eating disorder. 0:16:27.760 --> 0:16:30.960 Okay, so you have a triple threat in terms of 0:16:31.080 --> 0:16:34.000 eating disorders. Yeah, and I just want to break it down. 0:16:34.200 --> 0:16:38.080 So orthorexia, for people who aren't familiar, it's when you 0:16:38.560 --> 0:16:43.280 become almost not just addicted, but imprisoned by clean eating 0:16:43.920 --> 0:16:49.640 and you cannot deviate outside of that without In your case, 0:16:49.640 --> 0:16:50.960 it triggered bolimia. 0:16:51.240 --> 0:16:53.960 Yeah, and then I thought I could just cure that 0:16:54.200 --> 0:16:58.200 without going to see somebody, And I was like, Okay, 0:16:58.200 --> 0:17:01.640 I'm just going to stop purging, and that led to 0:17:02.000 --> 0:17:07.120 binge eating disorder, and so I chalked the swelling up 0:17:07.160 --> 0:17:08.359 to binge eating. 0:17:10.160 --> 0:17:14.160 Feeling consumed by her eating disorder, Nick stepped away from 0:17:14.200 --> 0:17:18.360 college and entered an outpatient recovery program, pushing her other 0:17:18.440 --> 0:17:22.879 symptoms aside. But once in recovery, she was finally able 0:17:22.880 --> 0:17:26.680 to address the underlying issues that had been affecting her 0:17:26.840 --> 0:17:27.800 since childhood. 0:17:28.920 --> 0:17:33.200 She was in recovery from her eating disorders, and then 0:17:33.400 --> 0:17:38.400 she started to realize that, oh, I'm having worsening cramps. 0:17:39.440 --> 0:17:42.920 Then her PMS symptoms really escalated. 0:17:44.200 --> 0:17:47.640 Tell me about the team and they start pointing things out. 0:17:48.520 --> 0:17:52.400 Yeah. I was mainly my dietitian who started to point 0:17:52.440 --> 0:18:00.240 things out because she noticed my inflammation was way worse 0:18:00.359 --> 0:18:04.560 than what she was expecting. So she had brought that up, 0:18:04.800 --> 0:18:08.440 and the symptoms just kept getting worse. In what way, 0:18:09.040 --> 0:18:14.200 I was urinating blood frequently, My lower stomach would cramp 0:18:14.320 --> 0:18:19.600 a lot, and the frequency of urination was around six 0:18:19.600 --> 0:18:23.360 to eight times per hour at its worst. 0:18:25.000 --> 0:18:27.199 This is when Nick began opening up to her family 0:18:27.280 --> 0:18:30.600 about what she was really going through, struggling to cope 0:18:30.600 --> 0:18:34.520 with the relentless nature of her evolving condition. With her 0:18:34.600 --> 0:18:38.560 eating disorder finally under some control, the real impact of 0:18:38.600 --> 0:18:44.399 her other symptoms started coming into sharp and alarming focus, her. 0:18:44.400 --> 0:18:48.639 Telling me I cannot live with these symptoms all the time. 0:18:49.000 --> 0:18:54.200 This can't be my new normal. Just seeing her so frustrated, 0:18:54.840 --> 0:19:00.200 she'd say, these are debilitating. I just want to live 0:19:00.200 --> 0:19:03.400 a quote unquote normal life. It was just the constant 0:19:03.720 --> 0:19:07.159 calls that she would give me. I was like, Okay, 0:19:07.240 --> 0:19:11.240 we need to sit down and have some real conversations. 0:19:11.920 --> 0:19:15.840 That is when my fitness Instagram started to blow up too. 0:19:16.200 --> 0:19:21.760 So I was gaining weight while I was dieting, and 0:19:21.840 --> 0:19:25.320 so I was photoshopping my photos. I was trying to 0:19:25.359 --> 0:19:30.960 portray this perfect lifestyle that obviously wasn't a reflection of 0:19:31.000 --> 0:19:35.200 what was going on in my actual life. And that's 0:19:35.240 --> 0:19:38.440 when I decided to move home for recovery. 0:19:39.200 --> 0:19:42.800 It was the lowest of lows. I wouldn't wish that 0:19:42.880 --> 0:19:43.520 on anybody. 0:19:45.520 --> 0:19:49.359 We'll be right back with Symptomatic, a Medical Mystery Podcast. 0:19:52.720 --> 0:20:02.160 Now back to Symptomatic a Medical Mystery Podcast. Mixed symptoms 0:20:02.200 --> 0:20:06.400 started in her teens, with acne and early periods escalating 0:20:06.400 --> 0:20:12.280 into constant UTIs, bladder pain and even bloody urination. Unsure 0:20:12.320 --> 0:20:16.119 of how to advocate for herself, each symptom was treated separately, 0:20:16.720 --> 0:20:20.560 never seeing the bigger picture. Though she gained some clarity 0:20:20.640 --> 0:20:24.520 through her eating disorder recovery, the struggle wasn't over. She 0:20:24.680 --> 0:20:27.880 was still making frequent trips to the er, but when 0:20:27.920 --> 0:20:31.000 the pain became too much to bear, Mick was more 0:20:31.080 --> 0:20:44.320 determined than ever to find answers. So what was happening 0:20:44.359 --> 0:20:47.600 with you mentally emotionally at this point? 0:20:48.200 --> 0:20:52.560 Emotionally, I mean no one would help me, Like at 0:20:52.600 --> 0:20:57.600 the emergency rooms. I was also getting handed drug addiction 0:20:57.720 --> 0:21:02.800 pamphlets because I was going so often, and I was 0:21:03.280 --> 0:21:08.000 at a loss, like, am I really just making this up? 0:21:08.240 --> 0:21:11.240 I'm looking down in the toilet and I'm seeing red, 0:21:11.800 --> 0:21:16.080 and all of my blood tests are perfectly fine, all 0:21:16.160 --> 0:21:20.159 my CT scans are perfectly fine. I remember one er 0:21:20.280 --> 0:21:24.920 doctor also said like, hmmm, are you constipated? It looks 0:21:24.960 --> 0:21:27.680 like there's a bit of stool build up in there, 0:21:27.680 --> 0:21:29.680 and I was like, I'm constipated all the time. 0:21:30.520 --> 0:21:34.720 And that's when your sister Christine stepped in. How did 0:21:34.760 --> 0:21:38.080 her expertise as a nurse end up coming into play? 0:21:38.240 --> 0:21:41.840 So I called her bawling my eyes out, and I 0:21:41.920 --> 0:21:44.040 think she was an er nurse at the time, and 0:21:44.080 --> 0:21:46.960 I was like, Christy, I am at my breaking point 0:21:47.040 --> 0:21:49.960 right now. I'm in so much pain. I cannot live 0:21:50.080 --> 0:21:53.080 like this. Is there anyone that you can recommend me 0:21:53.160 --> 0:21:56.240 to because I need to see someone fast. I need 0:21:56.240 --> 0:21:58.600 to see someone that will actually treat me and look 0:21:58.640 --> 0:22:02.720 at my issues. And she got me set up with 0:22:02.960 --> 0:22:04.200 another urologist. 0:22:04.960 --> 0:22:06.879 I just want her to note that she's not alone 0:22:06.920 --> 0:22:10.520 through this. I mean, she's physically going through the symptoms, 0:22:10.600 --> 0:22:13.960 but she's not alone. And I think that's really important 0:22:13.960 --> 0:22:17.000 for people with chronic illness to remember that they have 0:22:17.119 --> 0:22:19.840 that support system or to find that support system, because 0:22:20.600 --> 0:22:22.359 you can certainly get in your head. 0:22:25.240 --> 0:22:28.679 She was going to every doctor's appointment with me at 0:22:28.680 --> 0:22:31.240 that point because I was scared that I was going 0:22:31.240 --> 0:22:33.200 to miss something, and she was like, I don't want 0:22:33.240 --> 0:22:37.080 to miss anything. I want to help you move through 0:22:37.119 --> 0:22:42.680 this because you shouldn't be alone. And I can't explain 0:22:42.920 --> 0:22:49.240 how helpful it was, regardless of her nurse practitioning degree, 0:22:50.040 --> 0:22:54.600 just having someone there that I could speak to because 0:22:54.600 --> 0:22:57.639 I was getting thrown medical terms left and right, and 0:22:57.680 --> 0:23:01.320 she was able to actually understand them. When I didn't, 0:23:01.840 --> 0:23:06.359 or if I wasn't able to ask what that was, 0:23:06.600 --> 0:23:09.840 she was able to explain it to me afterwards. 0:23:10.280 --> 0:23:13.679 She would always tell me something is wrong, and I 0:23:13.680 --> 0:23:16.119 think you have to really trust your gut, and she 0:23:16.280 --> 0:23:20.359 was really trusting her gut, like this cannot be just 0:23:20.600 --> 0:23:26.360 a UTI or just a IBS symptom. And I always 0:23:26.400 --> 0:23:29.639 tell her, I say, Mick, you have to be an 0:23:29.720 --> 0:23:34.680 advocate for yourself with your health. Providers know you as 0:23:34.880 --> 0:23:38.560 the next patient. They don't know what you've been through 0:23:39.320 --> 0:23:43.280 with your whole staff infections. UTIs whatever. You have to 0:23:43.320 --> 0:23:45.840 tell the provider all that information for them to take 0:23:46.200 --> 0:23:47.399 everything into consideration. 0:23:48.480 --> 0:23:52.120 Finally hearing her full story, the urologists thought he might 0:23:52.240 --> 0:23:56.240 know what was wrong and started with a sistoscopy, essentially 0:23:56.280 --> 0:23:59.400 putting a camera into mixed bladder to get a clearer view. 0:24:00.080 --> 0:24:04.280 But even with this high tech test, nothing unusual showed up, 0:24:04.640 --> 0:24:09.560 leaving Mick feeling discouraged once again. Some medications offered temporary relief, 0:24:09.960 --> 0:24:17.560 but nothing lasted. You were actually diligently pursuing answers to 0:24:17.640 --> 0:24:21.160 something that has been going on for five six years 0:24:21.600 --> 0:24:25.720 at this point, and one set of doctors in the 0:24:26.080 --> 0:24:31.120 er telling you we can't help you. Go elsewhere, and 0:24:31.160 --> 0:24:36.160 now an expert is telling you not finding anything. Where 0:24:36.160 --> 0:24:37.040 do you go from there? 0:24:37.880 --> 0:24:42.399 Birth control, bladder medication, and elimination. 0:24:42.000 --> 0:24:45.600 Diet, eliminate what at this point I know? 0:24:46.000 --> 0:24:52.280 So I stopped drinking anything but water, no acidic fruits. 0:24:52.440 --> 0:24:55.480 I was scared to eat any fruit except for bananas, 0:24:55.800 --> 0:25:01.119 any spicy foods. They tried to make me stop eating 0:25:01.160 --> 0:25:04.679 gluten and dairy, but I was not in the mental 0:25:05.160 --> 0:25:08.439 state to do that yet with my recovery, and so 0:25:09.080 --> 0:25:12.680 I was basically eating bland food and water every single day. 0:25:13.000 --> 0:25:16.080 I avoided everything because I was so scared. I was terrified. 0:25:16.840 --> 0:25:19.399 You're feeling probably at your worst, and what kind of 0:25:19.560 --> 0:25:20.760 response are you getting. 0:25:21.840 --> 0:25:24.000 I was at the height of my social media career 0:25:24.600 --> 0:25:33.160 and I was slowly deteriorating. I hadn't really opened up 0:25:33.560 --> 0:25:37.280