Part 2 Aella's Story Continues: Advocacy and Challenges in Chronic Illness

In this episode of the "Occult Awareness" podcast, host Amy dives deeper into Aella's journey, exploring the complex and often frustrating realities of living with a chronic illness. From misdiagnoses and systemic healthcare issues to the everyday challenges faced by those with Ehlers-Danlos Syndrome (EDS) and other connective tissue disorders, Aella shares her experiences with raw honesty and courage.

Join us as we discuss:

• The impact of stigmatization and misdiagnosis in the healthcare system
• The importance of advocacy and self-advocacy for chronic illness patients
• Aella's personal experiences with various medical professionals and therapies
• The struggle for accessible housing and adequate support programs
• The necessity for better understanding and care for chronic illnesses

This episode not only sheds light on the systemic issues within healthcare but also highlights the resilience and determination of individuals like Aella. Tune in for an insightful conversation that aims to inspire and inform both patients and healthcare professionals alike.

Chapters

• 0:00 Recap: Discussion on high functioning and initial health issues.
• 0:49 Teaser: FND treatment were mean for Connective Tissue Disorder
• 1:17 Systemic Issues in Patient Care
• 2:45 Good doctor experience and MCAS diagnosis
• 6:50 Struggles with the healthcare system and inappropriate doctor responses
• 11:49 Cervical Collar Housing and TCL Support Programs
• 19:25 Restrictions on savings and ownership for disabled individuals.
• 20:50 Miscommunications and ineffective therapeuti c techniques.
• 23:35 Discussing dystonia and other symptoms
• 28:20 Next step plan for further diagnostic imaging and consultation
• 29:02 Lack of proper imaging and dynamic imaging
• 32:39 Issues with Current Medical Practice & over diagnosing FND
• 35:16 Refusing Depression Screener and Why
• 47:03 Aella's EDS Diagnosis Story
• 52:24 Next Step of Medical Diagnosis and Funding
• 57:09 Reflection on the journey and future steps.
• 1:01:49 Further Conversation about PHysical Doctor on Mental Health Diagnosis
• 1:06:21 Hope for Changes & Self Advocacy
• 1:09:10 Patient relations, success in self-advocacy, affords with chronic illnesses
• 1:16:51 Final thoughts and gratitude for the support and future care.

Transcript

00:00:05:20 - 00:00:43:21

Unknown

You don't be a high functioning individual. I mean, like high functioning. I hung from freakin trapeze. Like I had six packs up until 2018. You know, go from hanging fat trapeze and driving tent stakes to a wheelchair with a functional body. Do you know what they say with me? It's anxiety or everything. They blame everything on trauma, everything on anxiety.

00:00:43:23 - 00:01:15:06

Unknown

I end up in the hospital for malnutrition and dehydration. They blame it on PTSD. But if you watch the FND community and you watch all the techniques that they're using to get better, it's dysautonomia, it's EDS, it's MS. They're using all of the techniques to heal chronic illness. It, are meant to help people with connective tissue disorders.

00:01:15:06 - 00:01:50:07

Unknown

And so when a doctor goes out of their way to emphasize social circumstances on your medical chart, it stigmatizes the patient and refocuses the attention away from the physical, symptoms and on to the patient's social situation.

00:01:50:09 - 00:02:19:16

Unknown

Welcome back to Occult Awareness podcast. And I'm your host, Amy, in this last episode. Hi. Aella shared her journey with being diagnosed with functional neurological disorder without looking at all her physical injuries. In the past, and we explored the systemic issues faced by patients with mental health histories. So today, let's dive into part two of Aella’s story.

00:02:19:18 - 00:02:42:17

Unknown

Also, we dive deeper into these experiences and the broader implications on patient care. Now let's return to our conversation with Adler. Stay tuned and more insights and advocacy.

00:02:42:19 - 00:03:21:24

Unknown

My math skills are not like those one thing I got diagnosed extremely easily. I, I, I got I got to see this one. Doctor, doctor I wallah, and factually an interesting and, interesting, dynamic there because, I happened to know other patients that get to see her more frequently because they have, you know, mama bears and better insurance.

00:03:22:01 - 00:03:42:22

Unknown

So I get to see her about once a year, but she's very good, doctor. So when you when you go to get your Mast Cell tested, you got to do the whole pee test thing, and, she, she tells me, then I go to go do the test. She's like, all right, we're going to give you, like, three big jugs.

00:03:42:24 - 00:04:04:11

Unknown

just remember, you know, you can you can try as many times as you like. It takes people a couple tries. So don't worry, don't worry. And this was right before Christmas. I thought I was funny because, my mom had sent me, her cookies, which are.

00:04:04:13 - 00:04:36:04

Unknown

But I was like, somebody's got to eat this. So I delivered p and cookies. at the hospital. and about, I don't know, a week later, I get a call from a doctor. I was, like, second in command, and she's like, oh my God, oh my God, oh my God. I'm like, what? What? We've never seen this.

00:04:36:06 - 00:05:03:01

Unknown

I'm like, what? It's not that this doesn't happen, but we've never seen this. And I'm like, what? What the hell? What? She's like, you have it. I'm like, yeah, you haven't seen that. This is your thing. You know? So like, I, I hit two markers. so there's three markers that you're supposed to hit. most people have trouble hitting one.

00:05:03:03 - 00:05:33:13

Unknown

I hit two the first time, and then I hit two the second time, but even more so. They're not used to that. and then, they what they do to treat, mast cells, which I'm sure you know, is, they prescribe useful er.

00:05:33:15 - 00:05:47:22

Unknown

when in for lies all their shot and, that, went well for about 15 minutes.

00:05:47:24 - 00:06:22:03

Unknown

And then I had a seizure and and a foot. was about the end of that. and then I had a absolutely horrible year that where I ended up at the ER for a bout 12 hours. I was supposed to be admitted immediately, but was not. And it was in the middle of like, the height of Covid.

00:06:22:05 - 00:06:49:09

Unknown

I was not happy. I was having PTSD event because there was like a oxygen tank that fell into my curtain room. And then like the police came in with the screaming guy and like a doctor came in and was like, are you having a PTSD? I'm like, I have PTSD, but not for PTSD.

00:06:49:11 - 00:07:28:21

Unknown

So yeah, my life is ridiculous. I chalk it up to, medicate, try to try to blame the system or the system that has, the fault. It's not just the medicate, it's the whole entire healthcare system. yeah, exactly. It's like I responded to another post today that was like, do doctors understand how scary it is to be a chronic illness patient?

00:07:28:23 - 00:07:42:10

Unknown

And the doctor responded that that wasn't fair. you know, there are plenty of doctors that are chronically ill, like.

00:07:42:12 - 00:08:22:16

Unknown

But there aren't plenty of doctors that are the type of chronically ill that is scary. Yeah. Because they wouldn't laugh. But the person that answered like the most poignantly, was, a girl that she's like, my daughter has Addison's disease. And, she was when it got so bad that there wasn't any leg left for her to put a prosthetic on.

00:08:22:17 - 00:09:03:22

Unknown

She asked her mom wanted her to let her live. She's like, how do you explain that to a doctor? How do you how do you get a doctor to understand that? You know, like, you can't you can't. It's so heartbreaking. like that grief is you can't you can't put a finger on it. I mean, the fact that there's a lot of doctors didn't really even try to understand, like, and think.

00:09:03:22 - 00:09:55:19

Unknown

The other thing is, like, there's like the, the, the doctor culture. Like that, like kind of the camaraderie that goes and like that medical system, the ego, you know, like the alpha type kind of just goes there. Can't tell them nothing. Yeah. Like that chapter they read. Yeah. Let me tell you, even the ones that, you know, I feel like I can't talk too much about that, but, I definitely can agree that.

00:09:55:21 - 00:10:03:01

Unknown

And those also have type a little ego. Yeah.

00:10:03:03 - 00:10:35:08

Unknown

They're just like, you know, kind of like, One girl, I feel she has M.S., and she goes to get her pain medication altered, and, the doctor looks at her and goes. Have you tried grounding? It's like, no, it came here for me, man. I want to stick my feet in the dirt.

00:10:35:10 - 00:11:13:12

Unknown

So, like, service me. Help me like, oh. You're doing yoga. See? Exactly like. That this is. That is not your place. You know, like, it's. Like there's a time and a place for that kind of like medicine. And it's not in the doctor's office.

00:11:13:14 - 00:11:50:04

Unknown

I don't I don't feel like. Like I feel like that's for the individual to seek out for their self. Like, that's lifestyle stuff, you know, it's religion kind of stuff. Yeah, a little bit spiritual things and yeah. Chris, because I mean, a lot of people do take it as religion. So I was thinking right now at this point would be sort of like your main goal.

00:11:50:04 - 00:12:18:21

Unknown

You want to achieve and know that you got yourself a good collar. does that help. And to long do you wear it right now. so I wear where my, my, my neck brace went where whenever I'm like obviously going to be staying up for, for quite a while and I don't know if I'm going to be moving around a lot or taking a lot.

00:12:18:23 - 00:12:51:19

Unknown

I have a, a really obnoxious, obnoxious tick where I throw my head back. but, I typically don't wear it all day. No, not at all. and that would be counterproductive. and, I, I wear it in the car, but that's about it. and, I just had a feeling today with the moving.

00:12:51:21 - 00:13:13:04

Unknown

and, this, this this this, moving, moving forward now that I have exhausted the neurologists in my area, I, I just went to my general practitioner today, and,

00:13:13:06 - 00:13:47:24

Unknown

That's why I'm all picked up, and my blood test got my tramadol shot. I, my my my goal right now is to get my, so I, I have several support teams. I, I have, I'm not just like, out here winging it homeless. I, I, I have, I have a, a care agency that that comes and sees me weekly.

00:13:48:05 - 00:14:23:21

Unknown

They also come and bring me food, to supplement the very meager $66 a month. I also have, a mental health, agency that works in tandem with a housing initiative that I got myself involved with about five years ago going on six. And, that is a long term program that is actually really amazing. And it's designed for disabled people.

00:14:23:23 - 00:15:06:10

Unknown

so back a couple of years ago, North Carolina got into some big doodoo with disability community. They, actually were so bad that there was legislation drawn up. they were placing disabled and mentally ill people in, psychiatric housing and, yeah, in inappropriately and keeping them there. Yeah. So this woman won the case and, she created what is known as the T-sql program.

00:15:06:12 - 00:15:55:03

Unknown

So it was used to be the TCL AI program, which was making it an initiative is now full blown legislation. and, what it does is it provides the person, a choice of housing. Whatever it is that they need. so I could have chose to pick my pick my housing indepen dent, support and just go in and winged it, and they would provide me with, with, financial support and, community support, that I could set up and connect to and do everything solo and independent of them.

00:15:55:03 - 00:16:22:21

Unknown

And they wouldn't even come near me, or they could do what I chose, which is the TCL program, which gives me, Peyton and Sam. I should have a full team of four, but I had problems. I now have two, and, they are my KST team, which is a care support team. and they bring me back and forth to the hospital.

00:16:22:21 - 00:17:07:00

Unknown

I'll do anything I need. Peyton again, is a licensed therapist. He is my therapist. That comes weekly. and, they're basically my backup team for anything. And, and then I also have, when when they do find housing. And that is the thing that's really the bitch. Sorry. Language. it's, there's not a lot of accessible housing, and the program has to find a landlord card that will work with the program.

00:17:07:01 - 00:17:40:21

Unknown

so the landlord has to be willing to be up to code work within the government program, and, be willing to make the house or apartment or whatever accessible. So it's smaller than all the houses that are available on the list. so that takes a little bit longer. and I'm, I'm still waiting. and, they're actively looking now, which is nice.

00:17:40:23 - 00:18:15:16

Unknown

you have to wait until your name is up. And, when I do get placed, the house will be accessible. Met to all my standards for, wheelchair user. a I will also get a boost in my living stipend, because obviously, you can't pay rent with $900 a month. so the the increase it to pay the rent and be able to live comfortably.

00:18:15:18 - 00:18:43:19

Unknown

and, they will also give me community support and, I will have a nurse aid. I have up to 150 hours a month. They've got me, and, there will be a number of other things that that will also be added, like, furniture and things like a bed and, accessible, like things that I can add into the house.

00:18:43:19 - 00:19:16:05

Unknown

So it it's a really excellent program. it's just really, really exhausting. very long. So it's but, I mean, it's no better than section eight, where you yourself, just it will be accessible. and that's that's a real kick. I think we need to some initiative here. and I need to do a little bit more, but.

00:19:16:05 - 00:20:00:17

Unknown

Yeah. Yeah. it's not very friendly here. And, I mean, you know, about Social Security income. So, if you marry, not possible. Especially the other half. It's working. Yeah, exactly. Zero hours. yeah. It's rough. And like, they they said North Carolina will not let me work any hours. It's like. And the cap, it used to be 2000 in your account.

00:20:00:17 - 00:20:05:09

Unknown

Now it's 1700.

00:20:05:11 - 00:20:09:13

Unknown

It's like ridiculous.

00:20:09:15 - 00:20:29:04

Unknown

You can't really own anything. No. Nothing. And then like, the cars have to be like older ones. You can't have a newer car. Go ahead. And in this area you have to own a car to get around.

00:20:29:06 - 00:21:05:07

Unknown

It's like one like, you know, you consider about the disability that's often people wanted to have accessible went right to have. Right. relational like, rehabilitation. So, I've gone around to a number of places, and, like I said, I've, I've, I've ended up going back to the woman that I've been with for six years.

00:21:05:09 - 00:21:43:23

Unknown

like the, the city because I end up, getting people that don't clearly understand eds. Like, I ended it up at this one place that it seemed helpful. his. Feldenkrais method. it's, it's a different kind of, like, functional movement.

00:21:44:00 - 00:21:58:00

Unknown

Like exercise where you're, you're doing a lot more isometric exercises, so you're not putting a lot of weight on your body. and.

00:21:58:02 - 00:22:45:14

Unknown

It would have worked better. So had the instructor been a little more well versed. honestly, I'd say in physics and, working with autistic people, like, because our perception is very off and like. a lot of the time, like I was saying, flat out what I needed, and I feel like he was trying to read into it, you know, like it was like a neurotypical, like autism, like Miss Connect.

00:22:45:18 - 00:22:57:00

Unknown

Like I'd be like, let's use a mirror. And he'd not get it.

00:22:57:02 - 00:23:05:02

Unknown

You know, there's nothing to that statement. Get a mirror.

00:23:05:04 - 00:23:08:24

Unknown

Just never happened.

00:23:09:01 - 00:23:51:00

Unknown

Yeah. And, and then I had this other, other, younger guy that, My tics are really bad. Then, and my. Okay, I, I, I was, I was, not doing very well then either. a he seemed to exacerbate everything. he had me do these cross body, exercises that seemed to make me extremely dizzy.

00:23:51:02 - 00:24:25:06

Unknown

and then he had me do this one head exercise where I put my head up and I'd faint every time. Yeah. And, yeah. It's weird. The extension especially. Yeah. Yeah. when I'm in the pool, when whenever I straighten my body up completely because I have to focus, like. Like I am not sitting straight up right now.

00:24:25:08 - 00:24:52:02

Unknown

the, Courtney is the one I've known for six years. She she, prepares to catch me because my body just starts wiggling. I started spazzing as every time I. I cannot straighten my body without spazzing. it's, another sign that I'm just like, can we can we figure out what the hell is going on here?

00:24:52:02 - 00:25:34:07

Unknown

Because, like, it should be able to straighten up by now. I know, and then, Yeah, it's just weird. It's like. It's like another reason why I'm like Spinal Tap, man. it's like a disconnection. Like the PTSD. Yeah, but then, like, they're not sure enough for the neurologist to really taking their opinion. It's just it's. Yeah. And like, I don't, I don't have, much feeling in my lumbar region, like, is very, very weird.

00:25:34:09 - 00:26:09:03

Unknown

and then today it was really strange, too. I had blood taken and shot in my left arm, and I did not sense the needle in either instance. I was very wigged out by that. It it was very weird. So, like today. Okay. Did you start? Because because the I mean, the the the second I walk into the, into the blood, the blood lab, the, the, the tech walks over and grabs my arm.

00:26:09:05 - 00:26:35:14

Unknown

They're like, oh, she's here. hold her down. Okay. The first time I came in there, I, the the the tech is so fast with me. I mean, like, she does it with just, like, the fastest blood tech I've ever met in my life. The botanist. Whatever. I usually call her a vampire when I come in there.

00:26:35:16 - 00:27:03:02

Unknown

like how the vamps today. but, the other one comes and she's like, Mr. is here. Yeah. Grass here is like, he's. Like, yeah, but I, Yeah, she comes in and the the first time I just, she holds my arm to others like move.

00:27:03:04 - 00:27:08:20

Unknown

You not happiness.

00:27:08:22 - 00:27:25:15

Unknown

Yeah I like, I like the, the the techs and the and the nurses that that that, like, make your day, you know, it's like it makes it all bearable. Yeah.

00:27:25:17 - 00:28:05:14

Unknown

It's me. There. Really do. Yeah. And it actually sounds like, you know, like you do have a lot of dystonia as well. Like a very typical day, things like that. I actually see very clear. But like. Yeah, yeah, just connection of, kind of hilarious. Yeah. I know where you are. You North Carolina, right? Yeah, yeah, I do have, actually.

00:28:05:14 - 00:28:57:02

Unknown

I'm in Europe is in this bay and that this is our project. Yeah, it's I am, I'm hoping that, like, my, my next steps, I'm thinking, will be to do some more research on on who will listen. and, to kind of reach out of town, out of state because clearly it's not happening. And, I got my main doctor to agree to, like, help me out and get them to not look at my, like, chart, you know, like, see if I can get them to listen without like, maybe look at the imaging but not look at the notes.

00:28:57:04 - 00:29:40:20

Unknown

You know, that's that's kind of what I'm hoping I can get happened. You know on imaging. Yeah. Yeah. I have, and I, I do not see CRE so I don't and, and I have a friend like one of my, my best friends, from back in the day, she, her son and her daughter have ileus and, all have cre and have had the surgery, so I had them look at my, my scans as well.

00:29:40:22 - 00:30:16:06

Unknown

and and they're like, you seem in the clear with that. but they agree that, this is inconclusive and that I should probably get better imaging. You know, like, and especially of my spine because, like, when they do the full spine, it's not the full spine, you know, like the, the, you have to get specific areas, you know, like, they gotta know what they're looking for.

00:30:16:08 - 00:30:50:22

Unknown

and, the other, other part of it is like, I have absolutely nothing in the area where injured like with selection or, or with any kind of like functional imaging or anything like that. So you're really not seeing it from any other angle than upright or not upright from laying down, you know. Yeah. Supine. Yeah. That's right.

00:30:50:24 - 00:31:26:04

Unknown

So like so you have the most symptom. It's upright and but then yeah that's exactly the only time I'm not symptomatic is when I'm laying down. So then they claim they lay you down and they take the picture. And then that I get. Looks good. Exactly, exactly. Yeah. Doesn't seem to make sense to me. I do think there should be more, upright I places that, you know, available.

00:31:26:04 - 00:31:47:19

Unknown

Yeah. and you can still do it in the supine position, but it's just they know how to do it, right? Yeah. They have to lay you, but it's not weight bearing at the. Having a weight bearing is pretty important.

00:31:47:21 - 00:32:32:08

Unknown

Yeah. I, I really, I really feel like a lot of these, functional diagnoses would go away if they were just doing, you know, a, the MRI when people were saying they're symptomatic. It's and, and, a lot of the other functional diagnoses would go away if people actually looked at what the doctors were doing because I quote my what did your doctor actually do in the appointment?

00:32:32:10 - 00:33:09:19

Unknown

He looks at the notes and they don't actually show any doctoring. You get a functional diagnosis, but there's there's no evidence or testing or questioning that's actually written or, or, you know, shown to there's they're not shown their work. You know, the cause there isn't any work to be had. You know, it's showing their laziness right up front.

00:33:09:21 - 00:33:58:20

Unknown

And, and that's and that's why so many of us are saying this, this isn't a real diagnosis. Well, the thing is that maybe because you had a lot of mental issues. Yeah, it's written in a chart. So if isn't, then that you biologists seem still skeptical. I don't know if you ever feel. Yeah. So I, I feel like, the way I put it is that clearly social circumstances are going to impact somebody's health.

00:33:58:22 - 00:34:43:06

Unknown

But when a doctor goes out of their way to emphasize social circumstances on your medical chart, it stigmatizes the patient. It refocuses the medical care and refocuses the attention away from the physical, symptoms and on to the patient social situation. Also, if you emphasize in a physical health situation, a person's mental care, then the physical health of that patient is then shifted away from their physical care and then onto their mental care.

00:34:43:08 - 00:35:19:14

Unknown

So now again, in a physical health field, the mental health is now taking precedence. So you're going to your general practitioner and you have strep throat. And yet they're still asking about your bipolar disorder. I don't feel that is an appropriate place. I don't think your GP should be diagnosing any kind of psychiatric disorder. I don't think they should be giving out those depression screeners that a good split with chronic illnesses.

00:35:19:18 - 00:35:56:10

Unknown

I don't actually answer those anymore because the last, appointment I had with my last GP, is proof why I don't do them. I my last appointment with her was at 430 in the afternoon. I waited two hours after my appointment time, which I showed early to, to see her during my waiting time. She came into the room and asked me if I had anybody with me.

00:35:56:12 - 00:36:40:11

Unknown

I told her no, you know, if I had a ride waiting, and she said, oh good. And welcome. That was so insulting. And then by the time she came in, she, you know, apologized for me waiting or whatnot. But then when I recorded this doctor's appointment, she went on to this is right after I got out of the hospital, and, hospital visit that she never took note of.

00:36:40:11 - 00:37:13:09

Unknown

Never called, never followed up on nothing. she has in the past did not this time, she, And nothing. Didn't prescribe anything and check up on my. Well, for nothing at all. my new doctor, who I had already seen by the way. before going back to her, it was kind of perfunctory to go see her just so I could get my meds in order.

00:37:13:11 - 00:37:43:06

Unknown

they had already ordered me, protein shakes, a whole battery of vitamins and, antibiotics to make sure that there weren't any infections or anything else. You know, just run of the mill. Make sure check up. they also got me in touch with, you know, another community social worker to, to make sure that I could get more meals.

00:37:43:08 - 00:38:31:06

Unknown

yeah. Good stuff. But, my doctor, nothing. she ended up, writing after I was upset with her timing and the fact that she stopped typing when I listed my symptoms. she ended up diagnosing me with adjustment disorder. And adding to my notes the depression screeners that I did years before. Years before. Because I hadn't been doing them.

00:38:31:08 - 00:38:41:22

Unknown

So that's why I don't do them anymore. Because the only purpose that they have is leverage.

00:38:41:24 - 00:39:00:07

Unknown

Because when you take them, you have to answer something. And nobody is going to say zero to all. And when you answer one, you have depression.

00:39:00:09 - 00:39:42:18

Unknown

And I even had a pressure, you know, like I, you know, say zero all the time. Exactly. It's it's okay. So I, I, I found a training video on, YouTube for, social workers, care workers and everything on, these screeners. It's really enlightening. they're essentially trained to judge people. so these screeners, there's a lot of different kinds of screeners.

00:39:42:20 - 00:40:12:17

Unknown

but they're, they're trained to read people's body language, how they're dressed, how they appear, what they say, what they do, how they respond to having a screener taken, how they walk in the door if they're tired, if they look a weight, you know, they look like they're on drugs. Did they much coffee? Do they look homeless? Every thing is assessed.

00:40:12:19 - 00:40:47:06

Unknown

It's very gross. It's akin to like, eugenics. I really feel that because it's placing humans upon a class in society. And that's why I don't feel like any of this is appropriate in physical medicine. None of it is. That's why a functional diagnosis isn't appropriate because you're dating. Whether a human is functional or not. A part of a human is functional or not.

00:40:47:08 - 00:41:18:18

Unknown

What are you saying? Why is it functioning or not functioning? That's what we're here for. That's why we're here to see the doctor. We don't want to hear that. It's just not functioning. We want to know how to make it better. And. And like, I get it. You have all these people out here that are like. Yeah. So we have the FDA and we're seeing all these specialists and they're making it better.

00:41:18:20 - 00:41:28:15

Unknown

But if you watch the FMD community and you watch all the techniques that they're using to get better.

00:41:28:17 - 00:42:12:09

Unknown

I'm so sorry. Yeah. it's it's disorder. Nomi. It's eds, it's AMA. They're using all of the techniques to heal all of these chronic illnesses. You know what I mean? They're using the regulation techniques of the vagus nerve. They're using the techniques to to calm dystonia. They're they're using techniques that, you know, are, are meant to help people with connective tissue disorders and mass.

00:42:12:09 - 00:42:53:15

Unknown

So there's a lot of techniques that are applied to a lot of different disorders because otherwise, like the real Avanti technique, it wouldn't work. Exactly. So many cases that Tommy that it never worked. But then, yeah, the FDA is you for example, didn't really care as. Yeah, as it's so vast. There's too many like symptoms. I yeah I mean it's like you feel like so obvious, right.

00:42:53:17 - 00:43:24:08

Unknown

That's what I think. Yeah. I know that there isn't really enough funding for, you know, watching to our brain stem. So it's up to the brain. and exactly the most mysterious organ that we have, the one that has the least amount of, like, concrete science on it.

00:43:24:10 - 00:43:57:16

Unknown

And they have some. They have they have some. Yeah. But injury. Yeah. But it's like there's a lot we know but there's a lot we don't know. And to look to peg it all on, on trauma and to be like well it's got to be is just like the polls put on a lot of a lot behind those words.

00:43:57:18 - 00:44:25:06

Unknown

I mean, it is. And then essentially you said that to like it is quite a lazy diagnosis for exactly misdiagnosis. Yeah, it's doing a lot of work. And yeah, it's also funny how like, you know, the function we are kind of in between. Right. So yeah, they all say traumatic brain injury brings them or they want to survive.

00:44:25:06 - 00:44:59:02

Unknown

I mean like oh, so you guys survive so you don't know they have the problem. Yeah, exactly. It's essentially with, the people who did have a spinal cord injury and people who actually have a complete. But they're in between of all this. In complete. Is that that. Yeah, that somewhere in between it, it's like, well, you don't fit the mold.

00:44:59:04 - 00:45:17:18

Unknown

I, I never have work with me. Like, there's always anomalies. Like, you would think they would be really interested in anomaly.

00:45:17:20 - 00:45:40:02

Unknown

But no. And there's going to be a whole bunch more of them right now because of Covid. Like a lot more because there's a lot more cases of parts coming out now. and a lot more disorder. No. Mia.

00:45:40:04 - 00:46:08:06

Unknown

you can only imagine what the future brings. New questioning the disorder. No, Mia, it that is actually linked with ever. Like we're not looking at. True. Very true. Solid statement. It's like. I mean.

00:46:08:08 - 00:46:43:21

Unknown

Essentially, vagus nerve dysfunction. so this is like, like just went spazzy. Got a little bit I, I was, I was told once I was like, literally I had a video actually I put it in the into it's like, yeah, I, I, I was like, I need to report this. And then I told my spinal cord injury specialist, I said, well that that out this twitching like, you know, like in the neck spasm.

00:46:44:01 - 00:47:01:00

Unknown

Yeah it's done. So it's not possible. And I, yeah. I I'm like, well, we're like, let's see the.

00:47:01:02 - 00:47:36:19

Unknown

I have, massage therapist I see every now and then and, every, every time I see him, he is like, he puts my my jaw back in place and, he's like, before I met you, I didn't believe people could literally just, like, be themselves out of dislocation.

00:47:36:21 - 00:47:42:00

Unknown

so do is talk your face out of place.

00:47:42:02 - 00:48:21:23

Unknown

Like, probably, he's always putting his, like, he's got to do this thing where he, like, snaps my jaw back down. Sucks. and it's always dislocated and I never know it. The first day I met him, he he said to me, did you did you know you talked through your teeth and I didn't know I, I was, I was literally talking like this, and I had no idea that my jaw was dislocated and, that this is how it's talk.

00:48:21:23 - 00:48:55:03

Unknown

I was talking like, tripping over my tongue. And so the first time I saw I was talking like this and then he he unhinged it. And then I could talk a little bit like a and, here to there. yeah. This is insane. I noticed that I like I couldn't really open my mouth really wide and then, issues chart.

00:48:55:05 - 00:49:22:22

Unknown

Is it's pretty amazing when you're like, wait, I can eat more food now, Yeah. All right. That's like, open up, I feed you. And I was like, I cannot open it. Yeah. You're like, wait, there's a rubber band attached to my face. Oh. Like, oh, no.

00:49:22:24 - 00:49:33:10

Unknown

like to not even realize it. I was just like, oh, oh, oh, I can't do that.

00:49:33:12 - 00:50:00:10

Unknown

I, man, like, it's so many things that, like, I, like, the first time I learned I had eds was, I was in that first apartment I got go funded into, and, the girl that I went to high school with, was talking on, on zoom with and, at the time, I was still still able to stand.

00:50:00:10 - 00:50:32:23

Unknown

I was in the, the lock, this crutches and, I, I was standing in the in the kitchen and she screenshotted me, and, well, actually, her husband in and he's like, did you tell her that she has eds? I don't like you. What? And they're like, yeah, your knees go backwards. I'm like, what? So they showed me a picture of myself with my knees going backwards.

00:50:33:00 - 00:50:49:05

Unknown

And then for the rest of the night I sat there talking to her husband, going, yeah, yeah, yeah, that'll happen. oh, my God.

00:50:49:07 - 00:51:17:23

Unknown

I'm not. I my friend found out, how weird. I was, like, twisting my legs together, like. Yeah, yeah. And like, the whole pretzel thing, I, I really like to do that. I don't know, there was a comfort, but now I can do it because I can move my leg, so it makes sense. It makes much sense. just, hold this thing.

00:51:17:23 - 00:51:54:14

Unknown

I can't I can still, still do it. That's. Yeah. I mean, like, I'm paralyzed for then I still can. Yeah. Be flexible. but definitely my, like, it's a lot harder right now to move. Yeah. Yeah, definitely. My mine is like, all that time in the circus. And I never knew, like, how flexible I was. Yeah, like, you can be in some silhouette and just, like, ride.

00:51:54:16 - 00:52:02:14

Unknown

Like, I did all these, like, tricks and everything. And I never took advantage of the flexion.

00:52:02:16 - 00:52:47:09

Unknown

Hey, hey, come on, girl. And I could have easily had a rubber girl routine. Do you think if you get the help, the imaging you need and the right doctor. yeah. And whatever, like, you know, it's possible for you, like, you know, getting a funding or whatever. I'm hoping so. There's this, this thing that I'm hoping to apply for called the innovation wafer at, it's basically like Medicaid waiver.

00:52:47:09 - 00:53:33:17

Unknown

It's like, gives you, like, like, I don't know, make a wish path. Kind of like one procedure or something like that that you really need. They'll pay for and they'll, they'll cover or a doctor or something like that. so if I need something really good, like, they'll cover it. the the thing I'm, I'm, I'm really hoping for is to get to a doctor that understands EDS and can really just keep tabs on me in case everything gets worse, you know, because it is degenerative.

00:53:33:23 - 00:54:07:14

Unknown

And I want to make sure I know what kind of damage has been done, what kind of damage is continuing, because I know I have degenerative discs in my cervical spine. And, and I know that I have, osteoarthritis. I know, like, I have, this is, you know, a lot of torn ligaments and, and that kind of thing.

00:54:07:16 - 00:54:42:23

Unknown

there there's a lot of injuries that are. No, and there's a lot of places that are lacking feeling there's a lot of places that are are already problem areas. And I don't have a doctor that is going to be on my side and knows enough about Eds that can like, be ahead of it. My GP is he's on my side and he's good.

00:54:43:00 - 00:55:25:18

Unknown

But as a GP he doesn't. He's willing to research and learn, but he doesn't already know. I need a specialist that can be more advanced. I can be ahead of the curve and that's kind of would have been looking for it because I've never had it. I've never had somebody that that's ahead of me. I and I need somebody that that can do the research, can make sure I'm safe, can make sure in the future I'm if I do need the surgeries, I can get them, because right now I don't have anyone on my side.

00:55:25:20 - 00:55:55:02

Unknown

You know, I have no major specialist other than the mast cell specialist who isn't actually on my side there. I see them once a year, you know, they're just a specialist I see that will manage my mast cells. They're not going to go above and beyond for me. You know. So, and actually she's she's kind of a, another one of those ego people.

00:55:55:06 - 00:56:30:01

Unknown

She, I quote, said the words I can't be misogynistic. I'm a woman. We'll just let that one fly. but we still work with her. and, so it's like, I do my best with what I. There are some specialists that they do their job on their field and, like. Okay. Yeah, exactly. Yeah. I'm sorry. That's okay.

00:56:30:01 - 00:57:10:01

Unknown

That. So train the train trains passing and. Right. I have to check. So hey, this is just. Okay. You live like two. Yeah. Hey. Two blocks from a train. And it is bane of my existence. This this this this this. Yeah. Sorry. So I feel like, you know, the the paper about down syndrome, you know, talking a lot about the possibility of the instability, because they always somehow cannot keep their head up.

00:57:10:03 - 00:57:46:15

Unknown

I'm wondering, we need some research for the hyperextension. Yeah, that makes sense, Yeah. Especially was, six, like. Of course, like that. But they would backwards without although you would faint. And I actually had the same feeling and, Yeah. Guess if I surgery I was like, no, don't do it. And then I hyperextended a pass. Yeah.

00:57:46:17 - 00:58:03:09

Unknown

I pay interest, I mean I paper things. Yeah, I did bilateral decompression. That means okay, doesn't really get decompress. It's poking at. But yeah.

00:58:03:11 - 00:58:34:16

Unknown

it's interesting because it's like one of the, it's one of the feelings that I, I always describe to the neurologists is that I have this feeling like, like my, my brain stem is kind of like, piercing my head, you know, like, kind of kind of like my head's kind of like, resting on it on this, like, teeter totter, you know?

00:58:34:18 - 00:59:00:08

Unknown

It's like, kind of like it's just like up there. Yeah. It can feel like. Yeah. Kind of bumping to. Yeah, yeah, yeah. Kind of kind of like you're just like bouncing it up there. that's where I get my my occipital pain so much, I'll end up like, pulling my head up and, like, trying to release it. It sucks.

00:59:00:13 - 00:59:25:16

Unknown

And I feel I do something. I do feel like when whenever you get color in it, it it bit anybody's that pressure. Yeah. Yeah. Exactly. So I was just going to put my feelers up anywhere and everywhere because I was just like, do the research and just figure out where they'll take you because like. You know, medication. Yeah.

00:59:25:16 - 00:59:59:08

Unknown

There I had I had this doctor at Duke said they don't have one near us. So yeah. Good to have got to state. Yeah. Duke is like, like it's upscale in one respect. And then and another respect it. They have like the world's smallest exam rooms like like every, every single nook and cranny has been accounted for.

00:59:59:10 - 01:00:22:02

Unknown

like like, they, they have this old castle that was first converted into their first building. And that's like the entrance to the first main part of the hospital. And some of those exam rooms literally were closets.

01:00:22:04 - 01:00:54:20

Unknown

I, I can literally fit, like, my wheelchair, the exam room or the exam table, like the computer and like, literally a stool for the doctor and like the table for, like the the supplies. That's it. Like there's no turning room. Like it's. Yeah. Is it really wild and like to get to the exam rooms? You're going down like this really small door.

01:00:54:22 - 01:01:37:02

Unknown

Like, where's Harry Potter like. Yeah, it's really wild. Duke is all. They really, seem to be the big ones before leading to a lot of, like, CSF, big, or, you know, c h. Then I hope that it's also for, that issues. yes. I totally got my, my I h which diagnosed. Yeah. I'm waiting for, I'm not about to update you off about my new neurologist, so that will be it.

01:01:37:05 - 01:02:15:18

Unknown

I'm not surprised. I'm not surprised. It's just it did down. I have this much skills and, Yeah, I'm. I really like the way that you brought up the questionnaire. Those were, you know, depression and mental health screening. yeah. And also the very important thing about the structure issues as somehow, like, most of things are directed towards mental health, but then without any psychiatric training.

01:02:15:20 - 01:02:46:17

Unknown

Yeah, exactly. I'm not qualified. but then they think they qualify. They have the they can prescribe drugs. Right. But yeah. Exactly. And it's the same thing with neurologists like this. The last neurologist I saw, like not only did you see that gross statement, but she literally explained away her reasoning as well. Yes, I'm a doctor, so I can say this.

01:02:46:19 - 01:03:26:11

Unknown

I have the credentials. You don't. And that's where I say you haven't lived in my body and had my experience. Well, how does your credentials have any merit? You know, because literally all you're doing is with an FMD diagnosis is going off of hearsay. Because that's that's literally all you have to go off of when you are working with, mental diagnosis.

01:03:26:13 - 01:04:08:06

Unknown

and, and that and that's why I don't feel physical. medical doctors have good groundwork, you know, psychiatric medical doctors, they have a rapport. They understand the field. They understand know. And their notes are a lot more comprehensive. They're structured in a specific way. they are confidential. And they concern specifically the patient, not their symptoms.

01:04:08:08 - 01:04:49:18

Unknown

So when you have physical, doctor. Well, what they're putting out there is your personal details that are now made public, and they're expounding on them, and then their, their taking those very personal details, judging you on them, putting those judgments in public place. And then later down the line, other doctors make judgments upon those judgments.

01:04:49:20 - 01:05:11:18

Unknown

And then even further down the line, those judgments get judgments made upon those judgments. And then other doctors think that they're qualified to make judgments upon those judgments. And then you get diagnoses that are very unqualified.

01:05:11:20 - 01:05:48:18

Unknown

Can have you have no recourse. Yeah. What can you do? Those are your words. Are they. Are they are they interpretation, for words based on somebody else that was unqualified to interpret them in the first place? Yeah, that's when I had a same experience like that. Because submarines were and then exactly made it was all the subjective things.

01:05:48:18 - 01:05:56:08

Unknown

And then down the line it's the same copy paste.

01:05:56:10 - 01:06:28:06

Unknown

Yeah. I'm sorry that happened to you. That's really unfortunate. But yeah, but then that's what exactly you're brought up with. Is that exact happen that I think there are so many things that, you know, we wanted to change in the health care that makes us patient somehow in that picture. if that. And we have no control. Yeah.

01:06:28:06 - 01:07:03:10

Unknown

But if you do think it's the most important for you that it make that because difference. One thing I could change, it would be, that the doctors are the only people who can change our not the doctors themselves. That I don't think is fair. I think that, we we should have more ability over our own medical records, more autonomy over them.

01:07:03:12 - 01:07:42:19

Unknown

I, I also feel like when medical records are, tainted, mis represented or something like that, or there's an incident with a doctor. You shouldn't be required to, reengage with the doctor. and, and that's, that's where it becomes really contentious. The doctor themselves is the only one that can remove the thing that they said that is negative.

01:07:42:21 - 01:08:15:04

Unknown

And really, it could be a legal, like a medical diagnosis. They're not qualified to give or or something truly heinous or discriminatory or even racist. Anything. Anything at all, you know, I had a doctor tell, right after an ot, appointment, one where she and a couple doctors were supposed to have a meeting about me and come up with a medical plan for me.

01:08:15:06 - 01:09:09:02

Unknown

what happened is they got together and gossiped about me and then come up with nothing. I was upset by this and raised my voice. She recommended that I needed a chaperon to come to ot point Mintz. And then she wrote that I was an aggressive I a woman. I contested this and and won. and, you know, like, I shouldn't have had to go back to another appointment with her and, and then had to deal with her coming to that appointment with a chaperon for me.

01:09:09:04 - 01:09:51:21

Unknown

And, and then had to bring that up with the, the patient relations. They have more power than we do. And they can manipulate that through the system. When you don't come with, you know, a mom, a husband or somebody else, you have less power than they do. And I don't think that, fair and the and the patient, you know, doctor culture, I think that we should have more, autonomy, and more control over our welfare and our notes.

01:09:51:21 - 01:10:19:08

Unknown

Then, call patient relations so that they can send you a letter saying, sorry this happened. You know, that's that's pretty much what it amounts to because nothing ever gets removed or changed unless you have a good rapport with the doctor. Yeah. And it still doesn't get changed. a safe can put it underneath that is supposed to, but,

01:10:19:10 - 01:10:49:03

Unknown

Yeah, I think you quite understand the chronic illness. People that sometimes don't really have that. Energy that. That's the other part, the energy to do it. I, I feel very fortunate when I'm like, right now I'm in an upswing. I'm, I've just gotten, the Pam's medication, and I. I've just started it, on an upswing.

01:10:49:03 - 01:11:22:20

Unknown

It's starting to work. I, you know, I'm I'm doing I'm doing a little better. I've been getting consistent PTO appointments. the food has been coming consistently to me. so, yeah, I've been doing a little better. So, so I, I've, I've been able to dedicate the time and energy to you more appointments and do more research, and be more personally engaged.

01:11:22:22 - 01:11:54:04

Unknown

Like, I what I say is nothing happens in my care unless I personally stir the pot. like, unless I get involved in my housing, unless I physically, like, act in it. and it's why I don't mind when people say that the know I'm a strong woman or whatever other derogatory term they want to add. Strong women, you know, because that's what I got to do.

01:11:54:06 - 01:12:28:16

Unknown

But not everybody can do it. And I recognize that, and I recognize I can't be that every day. That's why I have so many support systems in place. So I have so many agencies in place because I need a ride to the hospital. and I have those months when I physically can't lift my own body and, and I, I can't make myself food and I can't get myself water.

01:12:28:18 - 01:13:02:17

Unknown

and I can't even push my own wheelchair, you know, like, I have a smart drive on this, like you have, I the there have been days I've been stuck in the bathroom because I can't make it over the little pump out of the door. You know it. It's. It's a privilege to be doing well, and it's like they don't get that.

01:13:02:19 - 01:13:39:03

Unknown

They they don't get the, you know, to not to be able to physically go to appointment and of do the telehealth placement, you know, like that's a big deal, you know, and every single time that that we show up, is effort and may mean I have a flare, you know, like I saw something is lupus. Some lady shows up in the waiting room with an exorbitant amount of perfume.

01:13:39:05 - 01:13:44:23

Unknown

I have a marcel attack.

01:13:45:00 - 01:14:26:05

Unknown

Nothing I can do about it. I sit, I'm sneezing my freaking head off and turn and into a shirt. I don't really see what happened. Day today. so now, of course, 15 minutes with the notes and. Bowel function getting is going. That should be the good place. Yeah, I have oxygenic urticaria and I do aquatic therapy.

01:14:26:07 - 01:14:32:16

Unknown

They don't put two and two together.

01:14:32:18 - 01:14:56:23

Unknown

I love my aquatic therapy, but they don't understand. Every single time that I get out of it, I have to go straight to the shower. And then I have to lather my entire body and ointment. When I go to aquatic therapy, it is a two hour ordeal.

01:14:57:00 - 01:15:25:18

Unknown

I it is exhausting, you know, like I go and I do the therapy and then I do I have to recover from the therapy that I have to recover from the shower. That I did therapy. Then I have to recover from putting the ointment on just so that I can drive myself back. Like we're talking about that your whole body spasm, like, you know, just Tonia.

01:15:25:20 - 01:16:07:02

Unknown

Yeah. So like, you will have to experience that because you're doing therapy. Yeah. I I'm, I'm very much looking forward to getting a nurse finished. Yeah. this workout, this workout. Yeah. I need one so bad. I know you probably read a lot, and you saw my story as well. It it always say, it didn't get better.

01:16:07:04 - 01:16:42:06

Unknown

Like you. You, I like it worse. yeah. I'm just hoping that you can get a specialist and then, you know me to, fight for it. a tough one. and I'm not one to stay quiet. Yeah. Yeah, yeah. I'm an advocate for this. Yeah. Thank you so much. You know, being here and, I talk about all that.

01:16:42:06 - 01:17:11:15

Unknown

I think it's so important. And you brought up actually quite a good point. I think that letting us to think about in this specially raised support system that you got, yeah, I think you're actually quite a resource for, you know, I help people around. Thank you so much for having me. I'm so glad we got to talk because I like I love your set.

01:17:11:17 - 01:17:43:11

Unknown

never found you for quite some time. And as a fellow musical person, you make me want to pick up an instrument again. and, yeah, I, I played flute and sex back in the day, and, I, yeah, I with with my my finger hypermobility. I'm just like, maybe I should I do, I do crochet now.

01:17:43:13 - 01:18:07:11

Unknown

that's my and I, I paint a lot, but now, now seeing seeing what you can do, I'm just like, maybe I should, That's why I'm actually on the project. Besides this, this is like, the first step. And I'm hoping that we getting some more funding to, you know, and then maybe sponsorship. That's why we're here.

01:18:07:14 - 01:18:49:05

Unknown

Push this one little movement further. That sounds fabulous. keep me posted. Yeah. And it's just sharing the love and the beauty of it. It it just really, you know, cohesive humanity. Like, I feel like the compassion and the love just needs to be brought back out. And it's just missing right now. I need to show people about the the little picture that I loved and need some it like there was some traumatic spinal injury and, that that's where it is like, you know, there's so many of us.

01:18:49:07 - 01:19:36:15

Unknown

Yeah. Yeah, exactly. Just getting awareness out. so people really start looking and start with delays. I like that because I feel I feel like there's just so much misunderstanding around it. and I feel like the history is, is really misunderstood and is forgotten. And, that's a really key missing point. Because, the fact that, it's really 90% women really needs to be mentioned.

01:19:36:17 - 01:20:16:19

Unknown

Yeah, that's kind of sinister. Thank you. See you soon. Thank you. Bye. If you found this episode in any way enlightened you, please consider subscribing to our podcast on your favorite platform and leaving us a review. And your feedback will help us grow and reach more listeners. Follow us on social media at @occult_awareness was and discord to stay connected and informed about our upcoming episode.

01:20:16:21 - 01:20:30:10

Unknown

Also, remember your story matters. The health matters. You are not alone in striking. Until next time, keep striving for knowledge and awareness by.