WEBVTT 1 00:00:00.200 --> 00:00:04.759 Well, come back, you've crossed the line. 2 00:00:06.799 --> 00:00:08.880 This is deplorable. 3 00:00:08.279 --> 00:00:14.640 Coordination on cold of conspiracy where blood is the blue 4 00:00:14.679 --> 00:00:20.440 brind in the potato and there're stitches nail the skin. 5 00:00:23.359 --> 00:00:23.800 That's it. 6 00:00:23.920 --> 00:00:24.480 It is so. 7 00:00:26.399 --> 00:00:32.479 Store up great selling futures, sell by sell from backroom 8 00:00:32.679 --> 00:00:34.439 laps to the glowing streets. 9 00:00:34.560 --> 00:00:36.520 They call it prigress. 10 00:00:37.200 --> 00:00:47.560 We call it a watery looking questioning and cracking loud. 11 00:00:48.799 --> 00:00:51.240 Get turned to the florable conation. 12 00:00:53.600 --> 00:00:54.520 That's pracy. 13 00:01:00.159 --> 00:01:12.640 Yeah, hi, and welcome back to another episode of Deplorable Nation. 14 00:01:13.200 --> 00:01:16.840 I'm your host, Deplorable Janet, and today I have one 15 00:01:16.879 --> 00:01:19.840 of my very best friends in the whole entire world, 16 00:01:20.359 --> 00:01:23.239 and I'm so very thankful for her each and every day, 17 00:01:23.879 --> 00:01:29.519 Miss Heidi, miss returning guest, How are you my bestie? 18 00:01:29.799 --> 00:01:32.439 I am good bestie, And we've been cutting it up 19 00:01:32.480 --> 00:01:36.040 for a minute and talking, which I love. Janet's amazing, 20 00:01:36.159 --> 00:01:38.599 She's one of my bestie booths. And we get to 21 00:01:38.640 --> 00:01:40.200 get on here. How much fun is it that we 22 00:01:40.280 --> 00:01:42.719 just get to get on here and also talk and 23 00:01:43.040 --> 00:01:45.680 teach people stuff, right, exact funnily right? 24 00:01:46.280 --> 00:01:50.920 And I'm I I'm super excited about the topic that 25 00:01:51.000 --> 00:01:56.159 we're doing today because you and Ellie and I were 26 00:01:56.200 --> 00:01:59.200 on a show before, and it was either before or 27 00:01:59.200 --> 00:02:02.920 after we were recording. You guys had mentioned this, and 28 00:02:03.000 --> 00:02:06.359 I'm like, what, I'm like, never heard of it, So 29 00:02:06.760 --> 00:02:09.400 I had to dive down a rabbit hole. And I 30 00:02:09.479 --> 00:02:12.560 know that may sound weird to some people that somebody 31 00:02:12.599 --> 00:02:15.120 with the medical background does not know something in the 32 00:02:15.159 --> 00:02:18.800 medical community, but it happens all the time. 33 00:02:19.400 --> 00:02:21.439 So there's too many things. 34 00:02:21.680 --> 00:02:26.039 Yes, And my brain is like the size of a peanut, 35 00:02:26.360 --> 00:02:30.280 so you know, I'm trying to expand it at all times. 36 00:02:30.360 --> 00:02:35.039 So today I'm super excited to talk about this because 37 00:02:35.159 --> 00:02:42.560 it is highly interesting to me. And after researching on this, 38 00:02:43.639 --> 00:02:46.840 I wonder if there aren't more people who have it 39 00:02:47.759 --> 00:02:52.759 who have never been diagnosed, or the doctors themselves have 40 00:02:52.960 --> 00:02:55.479 never heard of it, because that happens all the time too. 41 00:02:56.240 --> 00:02:59.520 So yes, I think that most people don't get diagnosed 42 00:02:59.560 --> 00:03:02.520 in general until middle age because of the fact. I mean, 43 00:03:02.520 --> 00:03:05.919 it's getting a little better now because it's more awareness, 44 00:03:05.960 --> 00:03:08.199 But I mean one in two hundred thousand is all 45 00:03:08.240 --> 00:03:10.960 they say it is. I don't think, so I think 46 00:03:11.680 --> 00:03:12.680 that it's way more. 47 00:03:13.159 --> 00:03:16.639 I do too, because something else I was reading said, 48 00:03:16.719 --> 00:03:22.159 like one in five thousand people or something is diagnosed 49 00:03:22.240 --> 00:03:30.639 with this, and this is Ailers dan Los syndrome, which 50 00:03:30.680 --> 00:03:36.520 is a very interesting thing because it has so many multifacets. 51 00:03:37.159 --> 00:03:40.919 Now I am curious. I'm going to pick your brain. 52 00:03:41.719 --> 00:03:45.520 Because I'm going to show you my parlor tricks too cool. 53 00:03:47.280 --> 00:03:52.800 I can't wait because you and Ellie both have this, 54 00:03:54.360 --> 00:03:57.680 So I want you to tell me, like about you, 55 00:03:57.840 --> 00:04:02.240 like how old were you when they discovered this, and 56 00:04:02.439 --> 00:04:06.759 what type do you have and all of the good 57 00:04:06.759 --> 00:04:08.000 stuff that goes along with it. 58 00:04:09.159 --> 00:04:11.719 So there's a bunch of different types of Elers Dawn lists. 59 00:04:11.719 --> 00:04:14.360 And I know that as a kid, I knew something 60 00:04:14.520 --> 00:04:17.120 was up, but I didn't know what until I was 61 00:04:17.199 --> 00:04:20.040 quite old, until I was in my mid thirties, and 62 00:04:20.079 --> 00:04:23.240 then I had an idea, but the doctor would not 63 00:04:23.319 --> 00:04:27.480 diagnose me because it is considered like fibromyalsia, like it's 64 00:04:27.519 --> 00:04:30.319 pooh pooed in the medical community, even though it's a 65 00:04:30.399 --> 00:04:33.279 real legitimate like DNA test, like you could check it out, 66 00:04:33.360 --> 00:04:36.319 like it's a thing. And it's kind of a sub 67 00:04:36.639 --> 00:04:41.040 a subpar part of like Marfan syndrome, which is when 68 00:04:41.120 --> 00:04:43.160 people are really tall and stuff, which my dad and 69 00:04:43.199 --> 00:04:45.600 Grandpa and that whole side of the family probably do 70 00:04:45.720 --> 00:04:48.600 have Marfan syndrome. They look like they do. You know, 71 00:04:48.680 --> 00:04:51.600 they're very tall. I always joke it's like the nephalem right, No, 72 00:04:52.560 --> 00:04:59.079 the me not really people. So when I had once 73 00:05:00.160 --> 00:05:05.399 it yeah, and so definitely werefolo of me and Janet 74 00:05:05.439 --> 00:05:07.720 are silly, so you'll have to excuse us stuff. But 75 00:05:08.120 --> 00:05:11.639 when I was young, I would sublux my ankle constantly, 76 00:05:12.360 --> 00:05:14.279 and they used to make fun of me. Oh, your 77 00:05:14.319 --> 00:05:17.600 feet grew fast. Oh, you're just tall and clumsy, because 78 00:05:17.600 --> 00:05:20.879 I am. I'm five foot nine. Well, after my back surgery, 79 00:05:20.920 --> 00:05:24.199 I'm pretty sure i'm five foot eight now. But anyways, whatever, 80 00:05:24.399 --> 00:05:27.600 I was five foot nine most of my life, and 81 00:05:27.920 --> 00:05:30.680 I grew really fast. I was by fifth grade. I 82 00:05:30.720 --> 00:05:33.879 was a grown up five foot nine lady. I got it. 83 00:05:34.160 --> 00:05:37.920 I got mistaken at school for a teacher, like weird stuff, 84 00:05:37.959 --> 00:05:41.319 you know, and so I would fall all the time, 85 00:05:41.480 --> 00:05:44.879 and I just would trip over my like over air nothing. 86 00:05:45.000 --> 00:05:48.079 And I have size ten feet, So I mean, okay, 87 00:05:48.319 --> 00:05:51.000 you know, like it makes sense. And so your parents 88 00:05:51.120 --> 00:05:52.959 kind of in the eighties, especially because I grew up 89 00:05:52.959 --> 00:05:55.600 in the eighties, nobody cared unless you were dying. It 90 00:05:55.639 --> 00:05:56.240 wasn't a thing. 91 00:05:56.680 --> 00:05:59.920 You better better have a limb that was solid off 92 00:06:00.040 --> 00:06:02.360 and it's just hanging there before you go the doctor. 93 00:06:02.519 --> 00:06:07.120 Absolutely, and so I was constantly embraces and then you know, 94 00:06:07.199 --> 00:06:10.079 the air casts and tearing ligaments, and I didn't know 95 00:06:10.120 --> 00:06:12.480 what the hell was really wrong with me. But finally, 96 00:06:13.240 --> 00:06:15.519 this is gonna sound insane, but this was a blessing. 97 00:06:16.279 --> 00:06:19.160 When I was about nine or ten, I think I 98 00:06:19.240 --> 00:06:22.600 was closer to ten, I finally broke the sucker and 99 00:06:23.040 --> 00:06:26.480 I broke it and walked on it for three days 100 00:06:26.720 --> 00:06:29.560 because my parents were like, will you do this all 101 00:06:29.600 --> 00:06:32.879 the time? And I mean I walked to school everything. 102 00:06:32.920 --> 00:06:34.920 It finally it blew up through doctor. 103 00:06:35.199 --> 00:06:36.759 Yeah. 104 00:06:36.839 --> 00:06:39.399 Yeah, it was like wrap it up, too bad for you, 105 00:06:39.399 --> 00:06:41.600 you know, and I did. They helped me with that, 106 00:06:41.720 --> 00:06:44.680 but they were kind of like geez kid, and I'm like, 107 00:06:44.800 --> 00:06:48.040 I know, but it's hurting. And so finally it did 108 00:06:48.079 --> 00:06:50.600 swell up like shit, I mean, it was bad. So 109 00:06:51.439 --> 00:06:53.480 it went like a baseball and finally I got to 110 00:06:53.680 --> 00:06:56.279 get an X ray and it was broken. And it 111 00:06:56.360 --> 00:06:59.800 was a blessing because it created enough enough scar tissue 112 00:06:59.800 --> 00:07:04.000 in ankle to stabilize it. Thank heavens because I was 113 00:07:04.120 --> 00:07:07.800 constantly tearing my ligaments over and over, and I was 114 00:07:07.839 --> 00:07:10.920 in that cast almost the whole year because it just 115 00:07:11.040 --> 00:07:14.279 didn't want to heal, which is another side effect of 116 00:07:14.360 --> 00:07:18.160 Eeler's danlos. And so I had no knowledge of this. 117 00:07:18.560 --> 00:07:22.040 I have very buttery soft skin. Anybody that's ever touched 118 00:07:22.160 --> 00:07:26.079 my hands or you know anything, they're like, oh my gosh, 119 00:07:26.120 --> 00:07:29.360 like what lotion to use. I'm like, no, I don't 120 00:07:29.560 --> 00:07:33.160 use If I use lotion, like maybe bath and body 121 00:07:33.199 --> 00:07:35.360 if I want to smell good, but I'm not lathering 122 00:07:35.439 --> 00:07:39.279 every couple of minutes. This is just how it is. Also, 123 00:07:39.319 --> 00:07:42.279 it tears really easy, like if you do the wrong thing, 124 00:07:42.319 --> 00:07:46.639 you're gonna you're your finger. And you know, just crazy 125 00:07:46.639 --> 00:07:50.279 stuff that doesn't happen to normal people. You become. My 126 00:07:50.360 --> 00:07:53.519 ex husband thought I was a hypochondriac, and I'm like, no, 127 00:07:53.680 --> 00:07:57.560 this is like a real problem. Like I'm having these problems. 128 00:07:57.639 --> 00:08:00.360 And I have very translucent you can see all of 129 00:08:00.399 --> 00:08:05.480 my veins and you know skin, and I have scoliosis. 130 00:08:05.560 --> 00:08:08.959 I have a double S curve, so it's mild, so 131 00:08:09.040 --> 00:08:12.879 that's lucky, but it's still there. And so I have 132 00:08:13.399 --> 00:08:18.360 the hyper flexibility type, and I had no clue. I 133 00:08:18.439 --> 00:08:21.000 just thought it was fun parlor tricks when I was 134 00:08:21.000 --> 00:08:24.480 a kid. So one of them is is they say, 135 00:08:24.519 --> 00:08:26.680 you know, when you put your hand out, it probably 136 00:08:26.720 --> 00:08:28.680 is like this. When I can, I can put my 137 00:08:28.759 --> 00:08:30.759 hand out. It can be at a ninety degree angle 138 00:08:30.839 --> 00:08:35.159 or further, and that's completely normal for me. And so 139 00:08:36.879 --> 00:08:39.200 then they test you, like if you can do this 140 00:08:39.919 --> 00:08:43.320 and go down or if you backwards like that? That's 141 00:08:43.480 --> 00:08:48.480 my funnest one like that way my elbows do it. 142 00:08:48.600 --> 00:08:51.600 My knees do it, and my knees. Let's put a 143 00:08:51.639 --> 00:08:53.679 lot of pressure on my knees because people stand like this, 144 00:08:53.879 --> 00:08:56.559 well I stand like that so that it bows out 145 00:08:56.600 --> 00:09:01.519 in the back. I have to consciously make myself not same. 146 00:09:01.879 --> 00:09:04.080 So you may have That's something. 147 00:09:04.399 --> 00:09:10.200 When I was researching this, I'm like, I wholeheartedly, ninety 148 00:09:10.440 --> 00:09:16.000 nine percent sure that I have this too, because I 149 00:09:16.039 --> 00:09:21.039 have the paper thin skin, but it's really soft. I 150 00:09:21.080 --> 00:09:24.120 have drmatographia. You can ride on my skin. I can. 151 00:09:24.240 --> 00:09:27.600 I have very stretchy skin. I can pull it up 152 00:09:27.759 --> 00:09:33.639 like a rubber band, but my knees constantly go backwards. 153 00:09:33.960 --> 00:09:36.799 I'll go back and see like my fingers are you 154 00:09:36.840 --> 00:09:40.120 double jointed in all your fingers and stuff like that. 155 00:09:40.120 --> 00:09:44.000 That's I was going to bring up double jointedness because 156 00:09:44.879 --> 00:09:46.799 I can't do it now because of course I had 157 00:09:46.799 --> 00:09:50.080 my spine feels right, But when I was younger, I 158 00:09:50.120 --> 00:09:54.039 could literally take my my legs and put them behind 159 00:09:54.039 --> 00:09:54.519 my head. 160 00:09:54.879 --> 00:09:59.519 Yeah no, and you probably you probably have the flexible, 161 00:09:59.759 --> 00:10:03.639 the the hypermobility, which sounds fun, guys, but here's the 162 00:10:03.720 --> 00:10:07.639 problem with it. It's not because we have a really 163 00:10:07.679 --> 00:10:11.320 hard time a with blood pressure at times, like mine's 164 00:10:11.440 --> 00:10:14.679 usually too low sometimes and my daughter's is too. Like 165 00:10:14.720 --> 00:10:19.159 you can pass out, you can you get weird types 166 00:10:19.200 --> 00:10:24.639 of flares. It's like loopus. My mom has lupus flares, 167 00:10:24.679 --> 00:10:27.600 and I'll mimic some of those things, but it's not 168 00:10:27.799 --> 00:10:30.240 I've never had a positive A and A, so a 169 00:10:30.320 --> 00:10:32.720 lot of times they try and blame it on my hashimotos, 170 00:10:32.799 --> 00:10:37.320 but I think it's more towards this. My doctor finally 171 00:10:37.399 --> 00:10:40.919 recognized it when I was probably thirty eight or thirty nine, 172 00:10:40.960 --> 00:10:45.240 and I finally got a diagnosis finally, But most doctors 173 00:10:45.279 --> 00:10:48.279 won't do it because just like fibromyalgia, they say it's 174 00:10:48.320 --> 00:10:54.000 a junk diagnosis, that it's oh people just want pain pills. 175 00:10:54.080 --> 00:10:57.080 It's horrifically painful in your joints, and I see it 176 00:10:57.120 --> 00:11:01.000 in my kids, which makes me sad. My son already 177 00:11:01.000 --> 00:11:04.159 has the clicking joints. My son already has chronic pain. 178 00:11:04.240 --> 00:11:08.600 My daughter already has pins. Yeah, they're kids. They're like fifteen, 179 00:11:08.759 --> 00:11:11.799 you know, and sixteen. Well he's sixteen now, and then 180 00:11:11.840 --> 00:11:15.639 my daughter is twenty three, and it's just it's just 181 00:11:15.720 --> 00:11:20.240 kind of sad, you know, to see them go through that. 182 00:11:20.600 --> 00:11:21.519 You know, you don't. 183 00:11:21.840 --> 00:11:24.759 And one of the common things for me, since my 184 00:11:25.399 --> 00:11:28.639 I can be standing or walking and my knee will 185 00:11:28.679 --> 00:11:33.480 buckle backwards, and so a lot of times I will 186 00:11:33.519 --> 00:11:35.960 get a Baker's cyst on the back of my knee. 187 00:11:35.960 --> 00:11:39.320 And for people that don't know, you have synovial fluid 188 00:11:39.480 --> 00:11:44.039 in your in your knee joint and it will bulge 189 00:11:44.320 --> 00:11:48.639 out the back of your knee and can be anywhere 190 00:11:48.720 --> 00:11:53.120 from like a golf ball size to a self ball size. 191 00:11:54.639 --> 00:12:00.279 It's extremely painful. And if it ruptures, all that fluid 192 00:12:00.720 --> 00:12:07.440 runs inside of your leg downward and your leg swells 193 00:12:07.519 --> 00:12:11.480 and it's it's ungodlike painful. But I get baker syst 194 00:12:11.679 --> 00:12:16.080 on a regular basis because my knees buckle backwards all 195 00:12:16.120 --> 00:12:16.519 the time. 196 00:12:16.919 --> 00:12:21.000 Yeah, it's it's a situation because people think, well, oh, 197 00:12:21.039 --> 00:12:23.440 you're just hyper flexible. Cool, No, you don't mean to 198 00:12:23.759 --> 00:12:27.279 like my I'll wake up. Last year, I really hurt 199 00:12:27.320 --> 00:12:30.440 my shoulder because I slept on it wrong and I 200 00:12:30.519 --> 00:12:32.960 woke up and I could feel it was out of place, 201 00:12:33.000 --> 00:12:36.559 which happens with eds. You learn how to put things 202 00:12:36.639 --> 00:12:38.200 back and all that sounds. 203 00:12:37.960 --> 00:12:42.559 Insane, but that's what yeah, right here and joint. 204 00:12:43.919 --> 00:12:47.399 And there's rings that they make for that, for stabilization 205 00:12:47.559 --> 00:12:50.960 rings for the fingers. They sell them on Amazon now. 206 00:12:51.080 --> 00:12:54.200 They're super easy to get and it helps brace their 207 00:12:54.240 --> 00:12:56.759 their cute races. Right, they don't look like the olden 208 00:12:56.840 --> 00:12:59.600 days like this will used to be a nightmare. This 209 00:12:59.759 --> 00:13:01.919 used to be. And I do think it has some 210 00:13:02.039 --> 00:13:05.440 to do with our backs because I think it slips 211 00:13:05.480 --> 00:13:09.840 out a lot and it's so bad for your disc, yeah, 212 00:13:09.840 --> 00:13:14.159 because then the disc is rocking and you know your vertebrate, 213 00:13:14.240 --> 00:13:17.200 you don't even it comes to a point. And I 214 00:13:17.240 --> 00:13:19.799 know Janet will probably know this if you've had this too, 215 00:13:19.919 --> 00:13:23.000 like where the pain is not really painful, like we 216 00:13:23.080 --> 00:13:27.440 talked about with you know, me being having a baby 217 00:13:27.440 --> 00:13:30.840 at home, or like being having a sistrupture inside my 218 00:13:31.200 --> 00:13:33.399 my whole ovary. I mean I almost died because it 219 00:13:33.480 --> 00:13:37.279 was a blood I was bleeding internally, and they were like, well, 220 00:13:37.320 --> 00:13:39.559 why didn't you come in? And I'm like, well, I 221 00:13:39.559 --> 00:13:42.240 mean it hurt, but it didn't hurt that bad. 222 00:13:42.240 --> 00:13:45.399 And I mean, that's the thing is, and that's a 223 00:13:46.240 --> 00:13:50.840 Some people have zero pain tolerance, like none whatsoever. But 224 00:13:51.080 --> 00:13:56.200 because I have dealt with chronic pain like my entire 225 00:13:56.279 --> 00:14:00.639 life from different things, whether it's my knees, my ankles, 226 00:14:00.759 --> 00:14:04.519 my back, you know, whatever the case may be, my 227 00:14:04.679 --> 00:14:10.720 pain tolerance is so high that, you know, like, unless 228 00:14:10.759 --> 00:14:14.759 I'm missing a limb, I'm not going to the hospital. 229 00:14:14.840 --> 00:14:19.559 Because I was telling Heidi before the show, had a 230 00:14:19.600 --> 00:14:24.480 little accident the other day and slipped on the running 231 00:14:24.480 --> 00:14:28.200 board of my truck, fell out, landed on my hip 232 00:14:28.720 --> 00:14:32.840 and my head, gave myself a concussion, scrambled my eggs 233 00:14:32.919 --> 00:14:37.480 up pretty good, no more of that, and hurt my 234 00:14:37.639 --> 00:14:41.600 hip and the hip pain was was god awful, But 235 00:14:42.799 --> 00:14:46.960 I'm like, it's still not bad enough to make me like, 236 00:14:47.000 --> 00:14:48.840 when I go to the hospital and get an X. 237 00:14:48.840 --> 00:14:51.399 Ray, do you think you may have subluxed it. Do 238 00:14:51.440 --> 00:14:55.759 you did you feel it pop back in? Maybe that's 239 00:14:55.759 --> 00:14:59.320 why it got better because it's weird. It's like excruciating. 240 00:15:00.000 --> 00:15:02.519 And then the only bad part is is if you 241 00:15:02.679 --> 00:15:05.000 catch a nerve like my shoulder when I woke up 242 00:15:05.000 --> 00:15:07.480 that morning, I caught when I popped it back. I 243 00:15:07.519 --> 00:15:10.679 didn't even you just do this when you when you 244 00:15:10.759 --> 00:15:13.600 go through this stuff. And I popped it back and 245 00:15:14.000 --> 00:15:16.240 I knew it needed to be popped back, and then 246 00:15:16.279 --> 00:15:21.120 when it did, I must have caught my nerve. That 247 00:15:21.279 --> 00:15:22.080 was a bad day. 248 00:15:22.279 --> 00:15:26.480 And then that makes your teeth go yeah. 249 00:15:26.639 --> 00:15:31.440 Oh that For absolutely months it was just awful and 250 00:15:31.519 --> 00:15:35.279 I thought, oh my gosh, like what is happening here? 251 00:15:35.399 --> 00:15:37.960 You know? And and I had to go to physical therapy, 252 00:15:38.000 --> 00:15:40.600 which I haven't had to do. And that's probably because 253 00:15:40.639 --> 00:15:44.840 I'm older now. I'm not recovering from that stuff as 254 00:15:44.919 --> 00:15:49.399 good as maybe I once was, you know, which sucks 255 00:15:49.720 --> 00:15:53.960 because it's well known with Elers down thos. Eventually you're 256 00:15:54.000 --> 00:15:57.360 probably going to have some problem that's serious. You know, 257 00:15:58.480 --> 00:16:00.840 mine was my back, I know yours has been your back. 258 00:16:01.480 --> 00:16:05.080 The nice part about Eler's downloast, which I think maybe 259 00:16:05.559 --> 00:16:08.679 would play into why you look so youthful. Same for me. 260 00:16:08.919 --> 00:16:11.519 It's the one thing we get. God like feels bad 261 00:16:11.559 --> 00:16:13.279 about it a little bit, I think, and he's like, 262 00:16:13.360 --> 00:16:17.720 they can have their face. I don't know, but it's nice. 263 00:16:18.320 --> 00:16:23.639 I'm happy. I'm like, okay, cool, Like it's I'm grateful 264 00:16:23.879 --> 00:16:29.759 because everything else sucks, and you know, it's just you 265 00:16:29.799 --> 00:16:31.759 wake up. You do get used to it. I will 266 00:16:31.799 --> 00:16:36.480 say this, the more I stretch, which is seems counterproductive 267 00:16:36.519 --> 00:16:41.159 because I'm already stretchy, it helps a lot, which is weird. 268 00:16:41.840 --> 00:16:43.279 So you just have to be mindful. 269 00:16:43.679 --> 00:16:47.559 And that's that's the funny thing. Because when I was 270 00:16:47.600 --> 00:16:50.559 having the massive hip pain and stuff from the accident 271 00:16:50.639 --> 00:16:54.480 this week, I was like, you know what, I still 272 00:16:54.559 --> 00:16:58.200 have to move because if I don't, I'm going to 273 00:16:58.279 --> 00:16:59.919 lock up and I won't be able to do it. 274 00:17:00.000 --> 00:17:05.240 Anything happens like with my shoulder and my feet and 275 00:17:05.920 --> 00:17:09.759 the bones in my feet get disjointed a lot of times, 276 00:17:10.960 --> 00:17:13.599 my ankles the whole nine yards. But I still like 277 00:17:13.799 --> 00:17:16.599 got on the treadmill and walked and whatever. You know, 278 00:17:17.160 --> 00:17:19.480 my hip was hurting, and then after I would walk, 279 00:17:19.519 --> 00:17:24.240 I would be like, oh, I feel better now right right? 280 00:17:24.319 --> 00:17:27.119 It gives you that little bit of a tension release 281 00:17:27.200 --> 00:17:30.200 because the physical therapist explained it to me that we 282 00:17:30.279 --> 00:17:35.440 have no really solid anything holding it together. And so 283 00:17:35.799 --> 00:17:38.759 like other people have like a solid brace to their bones, 284 00:17:38.799 --> 00:17:41.960 but ours are lax, and so the bones are just 285 00:17:42.039 --> 00:17:44.319 kind of like flopping around in there. So we have 286 00:17:44.400 --> 00:17:46.480 to train our muscle to do it, which is why 287 00:17:46.519 --> 00:17:51.240 we're constantly tense and hurting because we our muscles are 288 00:17:51.279 --> 00:17:53.880 taking the load that some of the ligaments should take 289 00:17:53.960 --> 00:17:55.400 right right, So, which. 290 00:17:55.160 --> 00:17:58.839 I think would probably definitely go hand in hand with 291 00:17:58.920 --> 00:18:05.480 people that have diagnosis of fibromyalgia or myofascial pain syndrome 292 00:18:06.119 --> 00:18:12.519 because your your system is not working together well. And 293 00:18:12.559 --> 00:18:15.960 that's the thing about and I want to tell people 294 00:18:16.160 --> 00:18:21.559 like what this is. So this is inherited, So it's 295 00:18:21.640 --> 00:18:28.039 genetic you know, from you know, parents, grandparents, because this 296 00:18:28.200 --> 00:18:31.480 is always passed down through the families, right, so other 297 00:18:31.519 --> 00:18:34.720 people guaranteed I've had it and nobody knew or or 298 00:18:34.759 --> 00:18:39.559 said anything. But it has to do with your connective 299 00:18:39.599 --> 00:18:45.359 tissue and your collagen because they are what give your 300 00:18:47.480 --> 00:18:54.519 system strength and flexibility, not just in your joints, but 301 00:18:54.680 --> 00:19:02.839 your muscles, your skin, your your organ your gums. Literally 302 00:19:03.039 --> 00:19:09.519 all kinds of things collagen and proteins like and several 303 00:19:09.519 --> 00:19:13.039 other things bind together to form connective tissue and your 304 00:19:13.039 --> 00:19:18.440 connective tissues and your muscle and literally all over in 305 00:19:18.480 --> 00:19:25.200 your system. And so let's go over a little bit 306 00:19:25.440 --> 00:19:35.160 of the thirteen different types that there are, because that 307 00:19:35.359 --> 00:19:39.599 was interesting to me. Now that the hyper mobility, when 308 00:19:40.640 --> 00:19:43.759 I definitely can see for myself, but I'm not too 309 00:19:43.799 --> 00:19:46.359 sure there's not more than one. 310 00:19:46.640 --> 00:19:48.680 You can have more than one, and I think I 311 00:19:48.799 --> 00:19:51.519 may have more than one. But he just didn't want 312 00:19:51.559 --> 00:19:54.319 to get into with He's like, that's a whole genetic 313 00:19:54.400 --> 00:19:56.880 to He asked me, you want to do that, And 314 00:19:56.920 --> 00:19:59.519 I'm like that sounds like thousands of dollars and he's 315 00:19:59.559 --> 00:20:01.680 like no, and you're like, okay. 316 00:20:01.400 --> 00:20:06.119 Well it's usually will not cover genetic testing, and those 317 00:20:06.160 --> 00:20:09.880 are out of pocket, and we're more talking thousands of dollars. 318 00:20:10.279 --> 00:20:14.799 You are literally talking at genetic testing like ten thousand 319 00:20:14.839 --> 00:20:22.559 dollars for like one test. They're very expensive. And with 320 00:20:22.599 --> 00:20:26.680 this it doesn't matter if you have a diagnosis or not, 321 00:20:26.960 --> 00:20:31.400 because there is no cure. All the treatments that are supportive, 322 00:20:32.960 --> 00:20:40.599 like physical therapy, bracing, sometimes corrective surgeries or whatever, but 323 00:20:42.279 --> 00:20:45.359 the surgery may or may not even hold depending on 324 00:20:45.680 --> 00:20:53.680 which type of EDS that you have. So anyways, well. 325 00:20:53.440 --> 00:20:57.039 And then the scarring and the every surgery I've ever 326 00:20:57.119 --> 00:21:00.839 had for my joints, which is a lots, went bad 327 00:21:01.359 --> 00:21:04.519 so fast from carpal tunnel after I had my son 328 00:21:05.119 --> 00:21:07.200 that they were like, you had to have ignored this 329 00:21:07.359 --> 00:21:11.319 for now. I already admitted with pain. I'm not the 330 00:21:11.359 --> 00:21:16.559 best about figuring it out fast. Okay, I'm not, but 331 00:21:16.559 --> 00:21:20.359 but that being said, with my hands, I did notice 332 00:21:20.400 --> 00:21:25.200 because they fall asleep and you're shaking them and everything, 333 00:21:25.200 --> 00:21:29.599 and so it's really painful. And I it was immediate. 334 00:21:29.680 --> 00:21:32.160 It was like he was born and then boom, my 335 00:21:32.279 --> 00:21:34.680 joints just went bad. And I told him. I said no, no, no, 336 00:21:34.799 --> 00:21:38.200 I was fine. Now I'm not fine. And so they 337 00:21:38.240 --> 00:21:41.680 did the testing my EMG, which is a nerve conduction study, 338 00:21:42.240 --> 00:21:46.759 and I had any Yeah, I had an eight second delay, 339 00:21:46.759 --> 00:21:49.559 and I was like that's not They're like, this is horrible, 340 00:21:49.680 --> 00:21:52.160 Like how why did you ignore this for so long? 341 00:21:52.200 --> 00:21:55.119 I'm like, I don't think you understand this. Definitely wasn't 342 00:21:55.160 --> 00:21:58.079 like this right before he was born, Like, definitely not 343 00:21:58.680 --> 00:22:02.039 and they were like, no, no, this years of you ignored. 344 00:22:02.119 --> 00:22:06.039 I'm like, they're trying to gaslight you into, you know, 345 00:22:06.240 --> 00:22:08.759 believing what they're telling you is true when you know 346 00:22:08.920 --> 00:22:11.240 dark good and well, it's not same thing with me 347 00:22:11.960 --> 00:22:15.400 with my back annoying. It's like this all of a 348 00:22:15.400 --> 00:22:19.400 sudden like bent over getting dry clothes out of the dryer, 349 00:22:20.359 --> 00:22:24.400 and my back went out and I couldn't like get up, 350 00:22:24.559 --> 00:22:27.680 and then you know, having to have surgery and stuff. 351 00:22:27.680 --> 00:22:29.240 And it was like, well, you must have had this 352 00:22:29.319 --> 00:22:30.400 problem for a long time. 353 00:22:30.559 --> 00:22:32.559 It's something you must have did something. 354 00:22:32.680 --> 00:22:33.920 Well, yeah, it's always your. 355 00:22:36.920 --> 00:22:39.640 I'm like, okay, listen, dude, I'm pretty sure I would 356 00:22:39.640 --> 00:22:42.319 have noticed if I couldn't fill my fingers anymore. Like 357 00:22:42.839 --> 00:22:44.559 I mean, I get. 358 00:22:44.400 --> 00:22:47.519 That, but it's usually like my pinky and my ring 359 00:22:47.599 --> 00:22:49.119 finger that'll go numb. 360 00:22:50.279 --> 00:22:53.240 So that's ulner it's still it's still the same thing. 361 00:22:53.279 --> 00:22:55.640 It's carpal tunnel, but it's on the other other nerve, 362 00:22:55.880 --> 00:22:58.519 so it's on the ulner side. And get it fixed 363 00:22:58.599 --> 00:23:01.000 right away, because I'll tell you, the one surgery I 364 00:23:01.039 --> 00:23:05.000 had that worked, that actually work and will work for 365 00:23:05.119 --> 00:23:07.240 me is when they don't open me all the way 366 00:23:07.319 --> 00:23:10.000 up they opened this hand. I should have brought these 367 00:23:10.000 --> 00:23:13.240 pictures for this. They opened this hand all the way up. 368 00:23:13.279 --> 00:23:15.279 I'll send them to you for your show notes or whatever. 369 00:23:16.279 --> 00:23:19.640 And it was a disaster of I can't even explain. 370 00:23:19.759 --> 00:23:22.640 When you see it, it looks like a Frankenstein hand, 371 00:23:22.920 --> 00:23:26.680 like they it's just horrible. This one they did laparoscopically 372 00:23:26.799 --> 00:23:32.400 and it beautiful, worked so good. This one, it's destroyed 373 00:23:32.839 --> 00:23:36.119 at this point. Even the newestbestos I am, the most 374 00:23:36.119 --> 00:23:40.599 importantest hand surgeon was like, you're screwed. It's totally destroyed. 375 00:23:41.119 --> 00:23:44.000 And we don't understand why because of the scar tissue 376 00:23:44.200 --> 00:23:47.880 because Eiler's damos. And I'm like, well, let's fix it. 377 00:23:47.960 --> 00:23:49.799 Like they went in one more time to clean out 378 00:23:49.799 --> 00:23:53.720 the scar tissue. Within three weeks it was there and 379 00:23:53.799 --> 00:23:56.440 they just said, sorry, it's failed. And also, by the way, 380 00:23:56.480 --> 00:23:58.920 we accidentally cut your nerve in half, so have fun. 381 00:23:58.920 --> 00:23:59.960 You don't have a thumb anymore. 382 00:24:00.319 --> 00:24:04.839 Like what I thank god, thank you. 383 00:24:05.960 --> 00:24:08.319 Thank God for muscle memory because it was my thumb 384 00:24:08.400 --> 00:24:10.680 and my finger and this is my blood drying. So 385 00:24:10.720 --> 00:24:13.920 the first time I drew blood and or started an 386 00:24:13.920 --> 00:24:17.319 ivy after I was like, oh my gosh, I was. 387 00:24:17.279 --> 00:24:18.119 Like, oh, I. 388 00:24:20.559 --> 00:24:24.079 Know. I'm like, he's like, but I had already told myself, 389 00:24:24.079 --> 00:24:26.440 like if I miss once, I'm just not going to 390 00:24:26.519 --> 00:24:28.759 torture this person, you know, I'm just gonna go get 391 00:24:28.799 --> 00:24:31.480 somebody else, Like maybe I just can't do this anymore, 392 00:24:31.599 --> 00:24:34.519 you know. And it's not the end of the world. 393 00:24:34.559 --> 00:24:37.079 But it was because I was like the the best 394 00:24:37.200 --> 00:24:39.640 ivy girl and it was like a pride thing. I 395 00:24:39.680 --> 00:24:41.599 was like, oh my gosh, because I did babies and 396 00:24:41.599 --> 00:24:44.880 the nickeu in their heads and other things. So I 397 00:24:45.000 --> 00:24:51.759 was go get her. And I'm like, so I think 398 00:24:51.839 --> 00:24:54.119 muscle memory is a real thing because even though I 399 00:24:54.160 --> 00:24:57.200 can't feel it as good, I'm still just as good. 400 00:24:57.400 --> 00:24:59.279 So I was like, thank you God, please thank you 401 00:24:59.480 --> 00:25:01.119