WEBVTT - Case #26: Nika 0:00:03.320 --> 0:00:07.000 Ruby. 0:00:09.000 --> 0:00:11.760 I was driving on the New Jersey Turnpike and everything 0:00:11.840 --> 0:00:15.000 sort of went blurry. It was like somebody's stabbing on 0:00:15.080 --> 0:00:16.360 the side of the head with an ice pick. 0:00:16.600 --> 0:00:21.840 She literally lost the ability to see doing sixty five 0:00:21.920 --> 0:00:26.079 miles an hour. It's God holding the wheel at that point. 0:00:26.600 --> 0:00:29.680 The disease is like a crow flying through the dark night. 0:00:30.080 --> 0:00:35.400 Patients go months or years incurring damage. In all of these. 0:00:35.360 --> 0:00:38.320 Organs, I can't see, and I'm in terrible pain. I 0:00:38.320 --> 0:00:40.720 gotta get some more safe, so I just gotta keep going. 0:00:43.080 --> 0:00:46.840 How terrifying would it be to fight an unknown enemy, 0:00:47.320 --> 0:00:51.400 one you didn't recognize and didn't see coming. What if 0:00:51.479 --> 0:00:55.000 that enemy was coming from within a disease that even 0:00:55.160 --> 0:01:02.080 doctors couldn't identify. Nearly half of Americans from some chronic illness, 0:01:02.120 --> 0:01:07.680 and many struggle for an accurate diagnosis. These are their stories. 0:01:09.200 --> 0:01:17.440 I'm Lauren brad Pacheco, and this is symptomatic. Nika Beeman 0:01:17.600 --> 0:01:20.480 van Shehek is a force to be reckoned with. In 0:01:20.600 --> 0:01:23.640 all areas of her life, she has pushed herself to achieve. 0:01:23.959 --> 0:01:27.240 She's an Emmy winning TV writer, author of four books, 0:01:27.319 --> 0:01:30.240 and garnered a Peabody Award in her twenties for her 0:01:30.280 --> 0:01:33.080 coverage of nine to eleven. Even as a young person, 0:01:33.360 --> 0:01:36.520 Nika was tenacious and full of personality. 0:01:37.319 --> 0:01:39.200 I'm the oldest. I have two brothers. 0:01:39.200 --> 0:01:41.959 I have one that's exactly four years apart, and then 0:01:41.959 --> 0:01:45.000 we have what we call the oops baby, who was fifteen. 0:01:44.680 --> 0:01:45.480 Years younger than me. 0:01:45.600 --> 0:01:48.160 So I was picking colleges and he was carrying around 0:01:48.160 --> 0:01:48.920 stuffed animals. 0:01:49.120 --> 0:01:51.680 It's funny because I was going to ask if they 0:01:51.720 --> 0:01:54.440 influenced your love of sports, But I bet you influenced 0:01:54.480 --> 0:01:55.520 their love of sports. 0:01:55.880 --> 0:01:58.000 They have no love of sports. I'm the only one. 0:01:58.000 --> 0:02:00.880 I always say that my father had me. I was 0:02:00.920 --> 0:02:03.120 supposed to be his son. I was the one who 0:02:03.240 --> 0:02:05.120 learned to fix things with him. I was the one 0:02:05.160 --> 0:02:07.440 who was more adventurous and who left home and was 0:02:07.480 --> 0:02:08.919 willing to go by themselves. 0:02:09.280 --> 0:02:10.080 I'm more of his temper. 0:02:10.160 --> 0:02:13.359 Unfortunately, so I was more of my father's son than 0:02:13.360 --> 0:02:14.040 his own son's. 0:02:14.360 --> 0:02:18.800 And not just any organized sports. You choose ice hockey 0:02:19.080 --> 0:02:21.560 and baseball once you get to boarding school. 0:02:21.840 --> 0:02:24.080 Yeah, I said to my father, there's really nothing to play. 0:02:24.160 --> 0:02:25.959 And my father said, you played Little League when you 0:02:25.960 --> 0:02:27.400 were a kid. I said, yeah, but they don't have 0:02:27.400 --> 0:02:30.440 a female team. They don't have female softball. And he said, 0:02:30.480 --> 0:02:32.080 you know what Title nine says, if they don't have 0:02:32.080 --> 0:02:33.880 an equal or greater sport, then they have to let 0:02:33.960 --> 0:02:35.600 you try out. So you go down there and you 0:02:35.639 --> 0:02:37.440 tell that coach that he has to let you try out. 0:02:37.919 --> 0:02:40.040 And so I went down there and said, my father says, 0:02:40.200 --> 0:02:41.720 I have to at least be given a shot, and 0:02:41.760 --> 0:02:43.880 they said, all right, then we'll give you a shot. 0:02:43.919 --> 0:02:47.760 And I made the team. And then by the next 0:02:47.800 --> 0:02:48.760 year we had another girl. 0:02:48.840 --> 0:02:51.240 So you know, I kind of ruined the whole team, 0:02:51.760 --> 0:02:53.760 or maybe improved it that much more. 0:02:55.919 --> 0:02:59.480 I know that, having read your book, you were very 0:02:59.520 --> 0:03:03.440 close to both of your parents, who have both unfortunately passed, 0:03:03.520 --> 0:03:08.320 but you and your father seemed to have a particular bond. 0:03:09.040 --> 0:03:14.240 How did his raising you impact your personality? 0:03:14.560 --> 0:03:16.239 The greatest thing I think I got from him was 0:03:16.280 --> 0:03:19.760 that I understood that no matter what your circumstances are, 0:03:20.000 --> 0:03:21.880 and for him it was growing up poor and a 0:03:21.919 --> 0:03:25.200 segregated South with one parent, that you can find a way. 0:03:25.520 --> 0:03:27.799 He knew he wanted to do other things, so he 0:03:27.840 --> 0:03:30.120 got on a bus and came to New York. So 0:03:30.320 --> 0:03:33.040 at some point was homeless on the subway. He ended 0:03:33.120 --> 0:03:36.280 up joining the police Academy, then going to the Air Force. 0:03:36.960 --> 0:03:39.160 Then he got sick in the Air Force and ended 0:03:39.240 --> 0:03:40.080 up having to come out. 0:03:40.480 --> 0:03:42.000 But he had done so many things. Then he decided 0:03:42.000 --> 0:03:42.960 he was going to go to college. 0:03:42.960 --> 0:03:45.800 He was going to get a degree, and so he 0:03:45.840 --> 0:03:48.360 got a job at NYU. He actually, when he was 0:03:48.400 --> 0:03:52.520 at NYU, participated in the Freedom Writers to register people 0:03:52.520 --> 0:03:55.400 to vote during the segregated South, and they made a magazine, 0:03:55.400 --> 0:03:59.320 and the magazine ultimately got inducted into the Library of Congress. 0:03:59.360 --> 0:04:01.720 And so I grew always seeing people writing and doing 0:04:01.800 --> 0:04:03.320 those kind of things. 0:04:03.600 --> 0:04:06.440 At a young age, Nica was praised for her abilities 0:04:06.440 --> 0:04:10.360 in writing. Her curiosity and investigative nature led her to 0:04:10.440 --> 0:04:13.360 join the school paper and go on to study journalism 0:04:13.480 --> 0:04:17.680 at Boston College. There, Nica was a standout student and 0:04:17.720 --> 0:04:21.080 an active member of club sports teams. She was headed 0:04:21.080 --> 0:04:30.880 towards the future at full speed, seemingly unstoppable. Around this time, 0:04:31.240 --> 0:04:34.480 as you're getting ready to graduate from college, you start 0:04:34.640 --> 0:04:37.640 noticing that something is a miss in terms of your health. 0:04:38.720 --> 0:04:41.039 In nineteen ninety three, I started having all kinds of 0:04:41.240 --> 0:04:44.200 what I consider unusual symptoms. By the time I got 0:04:44.200 --> 0:04:47.120 to senior year. I was like, I'm just always tired. 0:04:47.200 --> 0:04:49.839 There's joint pains that I didn't expect to have. I 0:04:49.839 --> 0:04:52.640 had dry mouth and dry eyes. My eyes would burn 0:04:53.160 --> 0:04:55.120 to a part where my vision would actually get blurry, 0:04:55.120 --> 0:04:57.760 which was strange because I had twenty twenty vision. And 0:04:57.800 --> 0:05:00.440 then I started having these debilitating headaches that I thought 0:05:00.440 --> 0:05:03.279 were migraines, and I'm like, what in the world is 0:05:03.360 --> 0:05:04.039 happening to me? 0:05:04.800 --> 0:05:09.359 So You're frequently visiting the infirmary and getting no answers. 0:05:09.640 --> 0:05:11.760 No, I'm getting a lot of tests for a lot 0:05:11.800 --> 0:05:13.920 of things, but all of them are coming out negative. 0:05:14.560 --> 0:05:16.680 I didn't have mono, I didn't have meningitis, I don't 0:05:16.720 --> 0:05:17.560 have hepatitis. 0:05:17.839 --> 0:05:19.360 So I started to collect things I. 0:05:19.320 --> 0:05:21.719 Knew I didn't have, but that wasn't getting me any 0:05:21.720 --> 0:05:22.800 closer to what I did have. 0:05:23.760 --> 0:05:27.520 This was just the tip of the iceberg, as varying 0:05:27.600 --> 0:05:32.359 symptoms began to disrupt her life, seemingly disconnected ailments that 0:05:32.360 --> 0:05:38.040 would place her on the long, frustrating, twisting path of misdiagnosis. 0:05:38.440 --> 0:05:40.760 It wasn't until like a couple of years after them, 0:05:40.760 --> 0:05:43.640 when I kept getting sick, that at some point other 0:05:43.680 --> 0:05:46.320 people started to notice like this is happening too frequently. 0:05:46.800 --> 0:05:49.200 As the years drag on, you realize that this is 0:05:49.279 --> 0:05:52.200 not going away, like this keeps coming every time somebody 0:05:52.200 --> 0:05:55.000 gets sick, I'm getting sick. And as you start to 0:05:55.040 --> 0:05:56.120 really see the pattern. 0:05:57.640 --> 0:06:00.320 So at this point a few years in to this, 0:06:00.880 --> 0:06:04.360 not feeling well is becoming a new normal for you. 0:06:04.839 --> 0:06:06.839 But you move to New York City and are living 0:06:06.880 --> 0:06:10.120 your life when out of nowhere, you end up in 0:06:10.120 --> 0:06:13.920 the emergency room because of a massive bleed. What happened. 0:06:14.560 --> 0:06:17.239 I was very sick and I was having a hemorrhage 0:06:17.279 --> 0:06:20.000 and they said to me, we think you have PCOS. 0:06:20.279 --> 0:06:23.920 You might have ruptured assist and that's what the problem is. 0:06:24.400 --> 0:06:27.960 And I said, oh, okay, so I have PCOS. 0:06:29.000 --> 0:06:31.840 I just need some medications. So they give me medication for. 0:06:31.800 --> 0:06:34.599 That, and I go, great, then I should be good, 0:06:35.320 --> 0:06:39.240 except for our wasn't because what I learned at some 0:06:39.360 --> 0:06:42.799 point was that we were treating a set of symptoms, 0:06:42.960 --> 0:06:46.200 but not all the symptoms. So I'm going to a 0:06:46.279 --> 0:06:48.800 doctor for headaches that he goes, oh, no problem, we 0:06:48.839 --> 0:06:50.920 can just make your brain not know that it has pained, 0:06:50.960 --> 0:06:52.080 so we'll give you this drug. 0:06:52.400 --> 0:06:54.360 And I'm like, Okay, no problem. 0:06:54.000 --> 0:06:56.120 That's great, And I go I'm tired, and somebody goes, 0:06:56.279 --> 0:06:57.960 you know what's great for a fatigue? You can just 0:06:58.000 --> 0:07:00.400 take some riddlin. You'll feel much better. You'll have the 0:07:00.520 --> 0:07:03.560 energy you need. I'm just going to each individual doctor 0:07:03.600 --> 0:07:06.240 and getting them to treat whatever symptom they treat. 0:07:08.640 --> 0:07:12.200 While Nika battles a mounting deluge of symptoms in New York, 0:07:12.600 --> 0:07:15.520 there is a doctor back in Boston whose work will 0:07:15.600 --> 0:07:19.800 lead to actually naming the unknown condition she's fighting in 0:07:19.880 --> 0:07:20.320 the dark. 0:07:21.120 --> 0:07:25.240 I am John H. Stone. I am a professor of 0:07:25.320 --> 0:07:29.640 medicine at Harvard Medical School and a rheumatologist at the 0:07:29.640 --> 0:07:31.160 Massachusetts General Hospital. 0:07:31.520 --> 0:07:35.200 A quick aside for those not familiar. Rheumatology is the 0:07:35.240 --> 0:07:38.800 medical specialty that focuses on the diagnosis and treatment of 0:07:39.000 --> 0:07:45.800 rheumatic diseases, which are inflammatory and autoimmune conditions affecting the joints, muscles, bones, 0:07:46.080 --> 0:07:47.320 and connective tissues. 0:07:48.160 --> 0:07:53.480 What your you to of rheumatology the multiorgan nature of diseases. 0:07:53.840 --> 0:07:58.280 Have always aspired to be a good internist who takes 0:07:58.360 --> 0:08:04.040 care of the entire body, including the mind, and the 0:08:04.120 --> 0:08:08.520 challenges of treating the rheumatic diseases really drew me to 0:08:08.560 --> 0:08:08.920 the field. 0:08:10.240 --> 0:08:14.280 Meanwhile, in New York, Nika is unwilling to let sickness 0:08:14.280 --> 0:08:18.480 dictate her life. This fighting spirit fortuitously guides her to 0:08:18.520 --> 0:08:21.280 meet her husband Mark in one of the busiest and 0:08:21.320 --> 0:08:25.960 most demanding journalistic hubs in the city, the newsroom of WABC. 0:08:27.320 --> 0:08:30.440 For someone who hasn't had the pleasure of meeting your 0:08:30.520 --> 0:08:34.760 lovely wife, how would you describe Nika? 0:08:35.320 --> 0:08:44.320 Tough, soft, kind, caring, She's fun she's funny. She a 0:08:44.320 --> 0:08:48.000 really good comedian when she doesn't try and be I 0:08:48.000 --> 0:08:49.719 think those are the ass I would use. 0:08:50.520 --> 0:08:53.760 What do you love most about her personality? She doesn't 0:08:54.080 --> 0:08:59.480 give a flying How do I say that? She generally 0:08:59.600 --> 0:09:04.040 doesn't care what people think about the decision she's made. 0:09:04.440 --> 0:09:07.360 If it is what is right or what is in 0:09:07.400 --> 0:09:10.640 her heart, She's going to hop over every obstacle and 0:09:10.840 --> 0:09:13.600 head in the direction where she needs to go. 0:09:14.679 --> 0:09:18.320 Did you have any idea when you first met that 0:09:18.360 --> 0:09:21.360 she was navigating all these health issues? 0:09:21.920 --> 0:09:23.440 No, I just thought she's a pan of the ass 0:09:23.440 --> 0:09:28.280 sometimes on a hard heartagg to crack. But no, I 0:09:28.360 --> 0:09:31.560 knew that there was one time in the infancy of 0:09:31.600 --> 0:09:35.240 our getting to know each other. I saw her taking 0:09:35.280 --> 0:09:38.199 pills at work and I was like, that's different. 0:09:38.640 --> 0:09:40.720 What's going on. Why do you need to take pills? 0:09:41.600 --> 0:09:43.840 And she was explaining that she was having some liver 0:09:43.960 --> 0:09:48.839 issues at the time. But then I had finished the 0:09:48.880 --> 0:09:52.720 conversation with I'm keeping all my organs, which made her laugh. 0:09:53.679 --> 0:09:56.800 When things started to get a little more serious and 0:09:56.880 --> 0:09:59.920 you realized that you had deeper feelings forming for Nika. 0:10:00.520 --> 0:10:02.679 What was it like for you to see her feeling 0:10:02.840 --> 0:10:03.400 so sick. 0:10:04.360 --> 0:10:07.040 I remember some of the earlier times when she was 0:10:07.120 --> 0:10:11.760 not well. That's where my frustration or the pain watching 0:10:11.760 --> 0:10:15.320 another human being you care about go through it brings 0:10:15.360 --> 0:10:19.960 you some pain. And she was basically like, you have 0:10:20.000 --> 0:10:23.800 to knock that off. I just need you to be strong. 0:10:25.200 --> 0:10:30.480 With Mark's unwavering support, Nika continues to fight this unidentified enemy, 0:10:30.920 --> 0:10:35.600 but the unrelenting struggle manifests in more than just physical consequences. 0:10:35.960 --> 0:10:40.040 The financial burden of dealing with her chronic illness is crushing. 0:10:40.679 --> 0:10:41.719 It is devastating. 0:10:41.920 --> 0:10:44.280 They tell you they don't discuss religion, don't discuss politics, 0:10:44.280 --> 0:10:47.680 and don't discuss money. Even when you're struggling, you don't 0:10:47.679 --> 0:10:49.720 even tell the people who are supposed to be closest 0:10:49.720 --> 0:10:51.080 to you, including my parents. 0:10:51.080 --> 0:10:53.200 How much it's costing me to be me? 0:10:53.840 --> 0:10:55.720 I know that I've spent over a quarter of a 0:10:55.760 --> 0:10:58.160 million dollars out of pocket of my own money to 0:10:58.280 --> 0:11:00.800 keep myself alive and to keep myself releiantly functioning. 0:11:00.960 --> 0:11:04.480 Did you ever get gas lit that it's in your 0:11:04.520 --> 0:11:08.560 head that maybe you didn't have all the symptoms you 0:11:08.640 --> 0:11:09.319 thought you had. 0:11:09.559 --> 0:11:10.240 No, I did not. 0:11:10.960 --> 0:11:13.480 They may have not thought it was as severe as possible. 0:11:13.520 --> 0:11:15.720 So I remember going to one doctor and saying, this 0:11:15.800 --> 0:11:17.480 is what's happening. He goes, but you're going to work 0:11:17.520 --> 0:11:21.480 every day. Yeah, and you're still having a relationship. Yes, Oh, 0:11:21.520 --> 0:11:23.000 then it's not that bad. Then come back when it 0:11:23.000 --> 0:11:23.520 gets worse. 0:11:24.200 --> 0:11:28.240 Over ten years into her struggle, Nika is still fighting 0:11:28.280 --> 0:11:33.040 through intense fatigue, headaches, joint pains, dry mouth and eyes, 0:11:33.480 --> 0:11:39.120 hormonal imbalances, treating each symptom in isolation, a decade of 0:11:39.160 --> 0:11:42.600 confusion and pain without a clear picture in sight. This 0:11:43.000 --> 0:11:47.800 arduous trek is one that doctor Stone unfortunately knows all 0:11:47.840 --> 0:11:48.360 too well. 0:11:50.360 --> 0:11:52.360 There are many diseases in which there is not a 0:11:52.400 --> 0:11:56.840 single diagnostic test, but it does require the clinician being 0:11:56.960 --> 0:12:02.320 familiar with the underlying condition and having access to the 0:12:02.360 --> 0:12:03.800 workup that's been done already. 0:12:05.320 --> 0:12:10.840 How as a physician do you help patients navigate the unknown? 0:12:11.360 --> 0:12:14.600 In terms of the psychological component, you. 0:12:14.559 --> 0:12:19.840 Can only imagine the psychological trauma that patients endure when 0:12:19.880 --> 0:12:24.040 they go for years and go from doctor to doctor 0:12:24.080 --> 0:12:27.640 and test to test and biopsy to biopsy and are 0:12:27.679 --> 0:12:31.880 not given the correct diagnosis. And it's critical to remember 0:12:32.480 --> 0:12:36.559 that patients are very fragile emotionally. The clinician really has 0:12:36.600 --> 0:12:38.800 to keep that in mind moving forward. It takes a 0:12:38.800 --> 0:12:43.760 long time to restore faith and confidence in the medical profession. 0:12:43.880 --> 0:12:47.360 If it's taken years of misdiagnosis to get to the 0:12:47.400 --> 0:12:47.920 right place. 0:12:49.520 --> 0:12:53.880 You're vast approaching fifteen years at this point without a diagnosis, 0:12:54.280 --> 0:12:58.080 and you've been so sick and in terrible pain for 0:12:58.200 --> 0:13:02.120 a lot of that time. You keep pushing in your 0:13:02.200 --> 0:13:06.520 career in life. Did you ever feel like giving up? 0:13:07.360 --> 0:13:08.840 It was just one of those things where you just 0:13:08.920 --> 0:13:12.160 learned to keep it moving. I wasn't raised by complainers. 0:13:12.360 --> 0:13:14.719 No matter how sick anybody was or what was going on. 0:13:15.360 --> 0:13:17.760 There was no excuses, you know, there's no excuse to 0:13:17.840 --> 0:13:20.400 not excel even if I didn't feel well, if I 0:13:20.400 --> 0:13:22.040 had to write it from my bed, that I was 0:13:22.120 --> 0:13:25.920 going to finish what I started. And so it's very 0:13:25.920 --> 0:13:28.839 difficult to be that and be a good patient. And 0:13:29.320 --> 0:13:32.560 the fundamental of how to be a good patient is 0:13:32.600 --> 0:13:34.400 not something that's taught to us, and it's something we're 0:13:34.440 --> 0:13:37.240 all going to need. Nobody ever told me that it 0:13:37.280 --> 0:13:39.160 was okay to say, you know what, this is not right, 0:13:40.559 --> 0:13:43.280 and so you endure far more than you need to endure. 0:13:43.880 --> 0:13:47.080 She is driving down road it has hazards, but she 0:13:47.120 --> 0:13:51.320 doesn't know the name of the road, and as medical 0:13:51.320 --> 0:13:54.719 issues start piling on to each other, she is determined 0:13:54.760 --> 0:13:57.959 to know what are these obstacles, what road I am on? 0:13:58.440 --> 0:14:00.840 To make sure you make the right term. When the 0:14:00.880 --> 0:14:01.920 turn is there. 0:14:08.160 --> 0:14:11.480 That road is about to become even more hazardous for Nika, 0:14:11.880 --> 0:14:15.880 with a new deadly obstacle materializing out of nowhere. 0:14:17.800 --> 0:14:19.160 I was coming back from Baltimore. 0:14:19.560 --> 0:14:22.400 I was driving on the New Jersey Turnpike and I 0:14:22.480 --> 0:14:23.480 wasn't feeling well again. 0:14:23.520 --> 0:14:24.920 I was having a terrible headache. 0:14:25.760 --> 0:14:27.600 It was like somebody stabbing in the side of the 0:14:27.600 --> 0:14:30.720 head with an ice pick, but on panic, and I 0:14:30.760 --> 0:14:32.680 closed my eyes for a split second, I was in 0:14:32.720 --> 0:14:36.600 the second lane, opened my eyes again and everything was blurry. 0:14:37.200 --> 0:14:41.360 I couldn't see. 0:14:42.560 --> 0:14:46.240 We'll be right back with Symptomatic, a medical mystery podcast. 0:14:48.960 --> 0:14:55.000 Now back to Symptomatic, a medical mystery podcast. Over fifteen 0:14:55.080 --> 0:14:57.920 years out from the starter for Symptoms, Nika has been 0:14:57.960 --> 0:15:01.280 living with a mysterious illness now for over a third 0:15:01.320 --> 0:15:05.200 of her life. She's been taking medication for insulin resistance, 0:15:05.560 --> 0:15:10.440 excess stomach acid, anti nausea pills, anti inflammatories, and a 0:15:10.560 --> 0:15:15.960 slew of painkillers. She's had biopsies, blood tests, MRIs, ultrasounds, 0:15:16.320 --> 0:15:22.200 transophageal echocardiograms, spinal taps, and more, with no clear answer 0:15:22.680 --> 0:15:25.920 as to the root cause of her sickness. It's now 0:15:26.080 --> 0:15:28.880 two thousand and nine and Nica's driving home to New 0:15:28.960 --> 0:15:32.160 York from a book tour in Baltimore when all of 0:15:32.160 --> 0:15:35.600 the sudden, she is hit with unthinkable pain. 0:15:39.320 --> 0:15:42.760 I was driving on the New Jersey Turnpike. It was 0:15:42.840 --> 0:15:44.560 like somebody's stabbing in the side of the head with 0:15:44.600 --> 0:15:51.520 an ice pick, and everything sort of went blurry. I'm 0:15:51.560 --> 0:15:54.920 only like an exit or two away from home, but 0:15:55.040 --> 0:15:56.800 i can't see and I'm in terrible pain. 0:15:57.880 --> 0:15:58.360 Oh my god. 0:15:58.400 --> 0:16:02.040 I know that I'm in trouble here, and I'm starting 0:16:02.080 --> 0:16:05.240 to sort of, you know, have those internal conversations with yourself. 0:16:04.920 --> 0:16:05.560 And I panic. 0:16:06.680 --> 0:16:07.880 Were you terrified? 0:16:08.560 --> 0:16:11.360 Yes, except for I also thought I gotta get somewhere safe, 0:16:11.640 --> 0:16:14.120 so I just gotta keep going. And I don't know 0:16:14.120 --> 0:16:16.400 how to explain it, but somehow I saw the guy's 0:16:16.440 --> 0:16:18.960 break lights in front of me, and something in my 0:16:19.000 --> 0:16:21.320 head said, follow those red lights, and so I followed 0:16:21.400 --> 0:16:23.560 him off of the exit, and it happened to be 0:16:24.000 --> 0:16:26.560 the exit that I needed to Newark. But as soon 0:16:26.600 --> 0:16:27.960 as I got to the ramp, I was like, Okay, 0:16:28.040 --> 0:16:30.520 now I'm on the shoulder and I'm just gonna stop here. 0:16:32.760 --> 0:16:35.560 I stopped, and thankfully my phone was in the cup holder, 0:16:35.640 --> 0:16:38.480 and I called my then boyfriend and said, something is wrong. 0:16:38.480 --> 0:16:39.480 You've got to come get amy. 0:16:41.200 --> 0:16:44.160 What was going through your head? And then minute between 0:16:44.280 --> 0:16:49.600 making that call and having your then boyfriend actually show 0:16:49.680 --> 0:16:50.800 up at the car. 0:16:50.920 --> 0:16:53.160 That's sort of when the panic sets in because you're 0:16:53.280 --> 0:16:54.440 not sure what's happening. 0:16:55.120 --> 0:16:57.240 I was like, am I going blind? There? Like some 0:16:57.320 --> 0:16:58.000 kind of tumor? 0:16:58.400 --> 0:17:01.280 So then I'm sure you go right to the emergency room. 0:17:01.520 --> 0:17:01.720 Right. 0:17:01.760 --> 0:17:04.399 We go to the emergency room. They're like, your blood 0:17:04.400 --> 0:17:07.400 pressure is elevated. So they do the spinal TEP. They 0:17:07.440 --> 0:17:10.800 really don't see anything. We go to my primary care physician, 0:17:10.840 --> 0:17:12.560 he has been with me many years, and he says, 0:17:12.600 --> 0:17:16.840 I think you're having a stroke. I was like, what 0:17:16.880 --> 0:17:18.720 the hell is he talking about a stroke? So I 0:17:18.800 --> 0:17:20.600 do the tests, I do the stress tests and all 0:17:20.600 --> 0:17:22.679 that stuff, and he says, I mean, your blood pressure 0:17:22.760 --> 0:17:25.280 is relatively normal. You probably just need to work out 0:17:25.280 --> 0:17:27.680 more and take this water pill and you'll be good. 0:17:29.400 --> 0:17:32.879 Even after what felt like a near death experience, Nika 0:17:33.080 --> 0:17:37.560 is no closer to understanding the true cause. Doctors have 0:17:37.680 --> 0:17:41.920 now added blood pressure medication, baby aspirin, and a diuretic 0:17:42.040 --> 0:17:45.119 to address what could have been a series of strokes, 0:17:45.640 --> 0:17:50.360 another inconclusive set of symptoms, another handful of pills. 0:17:51.600 --> 0:17:55.440 The biggest challenge, though, I think is underscored by Nika's case, 0:17:55.840 --> 0:17:58.679 and that is getting to the right diagnosis in the 0:17:58.680 --> 0:18:02.560 first place. The disease is like a crow flying through 0:18:02.560 --> 0:18:07.280 the dark night. Patients go months or years. Patients can 0:18:07.320 --> 0:18:10.639 be incurring damage in all of these organs at the 0:18:10.640 --> 0:18:15.120 same time. The issue is not so much difficulty treating 0:18:15.160 --> 0:18:19.159 the disease now as difficulty getting to the right diagnosis. 0:18:21.480 --> 0:18:26.240 As things get worse, symptoms compound, and Nika's ever growing 0:18:26.280 --> 0:18:30.320 list of medication confuses medical professionals who are unaware of 0:18:30.359 --> 0:18:33.640 her history. Mark tries his best to advocate for her 0:18:33.680 --> 0:18:38.240 in situations that require background knowledge of her ongoing health issues. 0:18:40.520 --> 0:18:42.880 Getting her to want to go to the er is 0:18:43.040 --> 0:18:48.840 not an easy task. She's not feeling well, she's in pain. 0:18:49.600 --> 0:18:52.840 So we take her to the hospital that's nearby. We 0:18:52.880 --> 0:18:56.680 get admitted right away and we're going over her medications. 0:18:57.080 --> 0:18:59.920 Almost every medication she takes a for an AWFU label use. 0:19:00.600 --> 0:19:04.199 So we're trying to explain to this nurse that she 0:19:04.320 --> 0:19:05.240 is not a diabetic. 0:19:05.880 --> 0:19:07.480 Don't treat her like a diabetic. 0:19:08.280 --> 0:19:09.679 But no, she's on met formant. 0:19:09.680 --> 0:19:12.399 She has to be a diabetic, and I'm like, she's not. 0:19:13.480 --> 0:19:17.040 All these drugs are taken for all label use, and 0:19:17.080 --> 0:19:19.480 you start running down all her meds and they keep 0:19:19.480 --> 0:19:22.120 thinking it's for what it's normally prescribed for, and we're 0:19:22.160 --> 0:19:27.119 like no, And she gets taken away for testing and 0:19:27.160 --> 0:19:31.200 the police officer assigned to the er comes over and says, 0:19:31.200 --> 0:19:34.600 you have to leave. Leave pardon why do I have 0:19:34.640 --> 0:19:37.560 to leave. My wife is in the back. I'm her 0:19:37.560 --> 0:19:41.200 medical proxy. If any decisions made off any blood's drawn, 0:19:41.240 --> 0:19:43.120 if a band AI's put on her and I haven't 0:19:43.160 --> 0:19:45.360 signed off on it, this is going to be an issue. 0:19:46.000 --> 0:19:47.800 I don't know if he believes me at this point, 0:19:47.920 --> 0:19:52.240 but we go into the waiting room. Ten minutes later, 0:19:52.800 --> 0:19:56.439 Nikka comes out of the er door with her pants on, 0:19:56.920 --> 0:20:00.639 with her gown on but falling off, and the offers like, 0:20:00.720 --> 0:20:03.359 where are you going? You can't leave? She's like, oh, yes, 0:20:03.400 --> 0:20:06.640 I can. I'm allowed to sign myself out at anytime. 0:20:07.040 --> 0:20:09.240 Why is he sitting here? Why is he not in 0:20:09.560 --> 0:20:12.639 the er? And I look and I go told you. 0:20:13.520 --> 0:20:17.440 The officer's like, uh oh, I messed up. Now that's 0:20:17.480 --> 0:20:22.480 an extreme example of advocating, but sometimes that's what you 0:20:22.560 --> 0:20:25.199 have to do. If I'm not there and she can't talk, 0:20:25.560 --> 0:20:27.240 they're going to treat her like she's a diabetic, or 0:20:27.280 --> 0:20:29.719 she's going to treat her like this or that, and 0:20:29.720 --> 0:20:31.120 they're not going to treat it properly. 0:20:35.359 --> 0:20:39.320 Nika is determined to just keep moving, though she's no 0:20:39.440 --> 0:20:42.320 closer to answers. She doesn't want to be held back. 0:20:42.840 --> 0:20:47.320 But this thing continues to rip through her gaining momentum 0:20:47.359 --> 0:20:52.720 and showing up in new and terrifying form. 0:20:52.760 --> 0:20:57.080 Twenty fourteen, everything changes. I wake up one day and 0:20:57.160 --> 0:20:59.800 I have people say, like a goiter looking neck, it's 0:20:59.800 --> 0:21:00.399 like swollen. 0:21:00.440 --> 0:21:03.480 It looks like a bullfrog. And I don't know why. 0:21:04.280 --> 0:21:05.800 And so I go to the doctor and she says, 0:21:05.840 --> 0:21:09.560 you have swollen lyft notes you have ad anopathy, and she. 0:21:09.600 --> 0:21:11.640 Goes, ah, it's not a big deal. You must have some. 0:21:11.640 --> 0:21:15.280 Sort of infection. It'll clear up. And I don't think 0:21:15.320 --> 0:21:18.400 anything of it. And it goes on three months. It 0:21:18.480 --> 0:21:22.600 just stays like that, and then it starts to hurt physically. 0:21:22.640 --> 0:21:24.840 To touch my own face, to wash it in the morning, 0:21:25.400 --> 0:21:26.320 it physically hurt. 0:21:26.800 --> 0:21:29.399 This is the first time that you have something that 0:21:29.640 --> 0:21:33.600 is a physical manifestation of what you're fighting. 0:21:34.320 --> 0:21:36.960 Yeah, something that's really impeding me in a way that 0:21:37.000 --> 0:21:38.600 I realize that I have to do something. 0:21:39.359 --> 0:21:41.040 And I go and I go to a different doctor. 0:21:41.119 --> 0:21:42.920 My doctor is not there that day, and I find 0:21:42.920 --> 0:21:45.199 the person who is on call that day and she 0:21:45.280 --> 0:21:48.000 looks at it and she goes, that's not good. Can 0:21:48.040 --> 0:21:50.000 you go see a friend of mine? And I said, okay, 0:21:50.480 --> 0:21:52.359 he'll see you right now, and I go to his 0:21:52.520 --> 0:21:55.520 office and he says, so, when would you like to 0:21:55.520 --> 0:21:58.320 have surgery? And I was like, I'm a little confused. 0:21:58.960 --> 0:22:01.760 Did she not tell you why you were here? She 0:22:01.800 --> 0:22:06.440 didn't tell you she suspected lymphomo and that was what 0:22:06.560 --> 0:22:09.720