Finding the Joy in Life: Marika's Journey with Loeys-Dietz Syndrome & "Occult" Paralysis

Marika emphasizes the importance of grieving and finding joy in daily life despite the difficulties. The hope is that the conversation will help others feel less alone and inspire better care in the medical field.

In this episode of the "Occult Awareness" podcast, host Amy Wang-Hiller interviews Marika, who shares her journey navigating complex health conditions. Marika discusses living with Loeys-Dietz syndrome (LDS), a connective tissue disorder with various symptoms like hypermobility, vision loss, and neurological issues. Despite her challenges, Marika continues to seek treatment and advocate for better care.

She recounts the difficulties she faced in receiving an accurate diagnosis and the challenges she faced with accessing comprehensive healthcare due to her condition's rarity. Marika emphasizes the importance of finding joy amid uncertainty, describing how she finds solace in gardening, photography, and spending time with her children. The conversation also touches on societal perceptions, the need for healthcare reform, and the importance of community support for individuals facing similar struggles.

1. Marika's Diagnosis Journey
   • Symptoms and conditions leading to her diagnosis of Loeys-Dietz syndrome.
   • Difficulties in obtaining a diagnosis due to a lack of awareness about rare disorders.
   • Impact on her daily life and comorbidities.
2. Healthcare System Challenges
   • Struggles with getting appropriate imaging and comprehensive medical evaluations.
   • Misunderstandings in physical therapy and the importance of functional goals.
   • Financial challenges related to specialized care and out-of-pocket expenses.
3. Living with Loeys-Dietz Syndrome
   • Navigating daily life with a rare condition.
   • Finding joy and strength in creative outlets like gardening and photography.
   • Balancing familial responsibilities while managing her health.
4. Advocating for Change
   • The importance of mental health support and community.
   • Challenges in societal perceptions and medical stereotyping.
   • How Marika aims to increase awareness and offer hope to others.

Chapters

• 0:00 Introduction to today's interview
• 1:51 Outline of Marika's Journey with Diagnosis before FND
• 7:55 Interlude
• 7:55 How involved into diagnostic journey
• 11:45 information about Loeys-Dietz Syndrome
• 18:55 How Paralysis Started
• 22:44 Possibility of Cauda Equina but Ruled Out
• 23:54 How Negative Imaging led to FND Diagnosis
• 26:27 FND, Conversion Disorder, & PNES
• 28:19 Spinal Trama not having on Record
• 32:41 Working with FND Physio
• 37:55 Inconsistency vs. Spasticity
• 38:26 FND - Work on Mental in Order to Get Medical Care
• 41:10 Been forcing herself to keep adapting with continuous progression
• 42:59 stereotypical things people say to her situation
• 46:32 Imaging Report from the Radiologists Affects Patient's Care
• 55:07 Fianances Tied to the Neurosurgery Consultatition & Surgery
• 56:55 Care Team with All or Nothing Thinking
• 1:03:50 Daily and Small Traumas with Spinal Instability
• 1:09:32 Not Recognized by Especially the Physio
• 1:16:39 Her Mission of Making Others Not Feeling Alone
• 1:17:56 Outro & Acknoledgement

Transcript

00:00:00:00 - 00:00:43:04

Host

Welcome to Occult Awareness, where we illuminate the unseen challenges in health care. I am your host, Amy Winehouse, and each episode we explore twisting paths to diagnosis and challenges faced by those with condition that don't show up on those standard checkup drug ads to CCI and beyond. We are here to bring you stories from those on the journey towards diagnosis.

00:00:43:06 - 00:01:17:16

Host

We also feature insights from health professionals who navigate these rare disorders. Join us as we uncover hidden truth, advocates for the unheard, and empower you to take charge of your house.

00:01:17:16 - 00:01:49:15

Host

Today we will hear from guest Marika and who has shared her personal house with multiple conditions that definitely get a lot better with clarity with the real diagnosis, but also face a lot of uncertainty as well. So let's tune in and see our other journey of a quiet awareness. So thank you so much for coming. Being on this show.

00:01:49:17 - 00:01:51:03

Marika

thank you for having me. 

00:01:51:03 - 00:01:59:03

Host

I just want to hear your story first. Like, give us a little bit of background as what condition?

00:01:59:03 - 00:02:19:11

Host

Right now. You already know that you have. And how did that started for you? We have some very, I don't know, known conditions. So I have many, and, some possible, some unknown, right now, known conditions.

00:02:19:12 - 00:03:15:04

Marika

I have Loeys-Dietz syndrome, which is a connective tissue disorder similar to EDS and Marfan. but also I have some, I have, everything from, hypermobility with it and increased risk of inheritance. and then to co-morbidities, which include neurogenic found on water, and have additional needs with those two so vision loss and things like easy bleeding and bruising and possible CCI like with CCI, easing and chronic fracturing, and no,

00:03:15:06 - 00:03:28:15

Marika

I can't talk about my sleep and, words don't come. brain talk and,

00:03:28:17 - 00:04:07:24

Marika

Yeah, yeah, a long, long, very long list. long with hypermobility. subluxation and, yeah. Well, thank you so much for all. Yeah, yeah, I'm sure, I'm sure that once we start talking more and, they seize up and then you like. Oh, yeah. This. Yeah. That is slowing us up. I have a list I could read off of this about four pages of various items that, like.

00:04:08:01 - 00:04:33:15

Marika

Yeah. So I definitely see a lot of, like, neurological, logical, just even, like, you know, in the first month, we don't really, you know, this podcast or even in real life, like, people don't really judge try to with that. But, medical setting, as you know, that we try to get diagnose, everything will be looked upon.

00:04:33:17 - 00:05:05:18

Host

And how is the whole journey so far trying to find out, you know, what's going on and why is that? We initially started to look into it. Oh, when I initially started looking into actually, my daughter had symptoms and, it's interesting and it's equally been, before I really had major symptoms, a whole of years ago.

00:05:05:18 - 00:05:42:21

Marika

And her doctors would not do many testing. I suppose at home, I feel like nonsense. so I started going to a few more doctors and geneticists, for myself. and I had already had some, things, including epilepsy diagnosed, but, nothing that we could say, was, hypermobile some kind of joint pain, but nothing that would say, hey, you have this big thing that's looming and could be related to your child's symptoms.

00:05:42:23 - 00:06:24:05

Marika

but in talking with the geneticist, she said, no, you have more associated and connected to this other possible. And we should do some more testing. and you have more symptoms related to, this syndrome that is similar to IBS. and then sort of testing for, that came back positive for Loeys-Dietz syndrome. And then about six months later I had severe symptoms similar to Cauda Equina syndrome and ended up inpatient for about six weeks.

00:06:24:07 - 00:06:52:17

Marika

I had full paralysis at one point during that inpatient period and was on event for a few days while I was there. my left hand was clenched for a couple of months and, took significant therapy to get back, to a workable position from that and enough mobility that I could be on my own.

00:06:52:19 - 00:07:22:10

Marika

and while I was inpatient, I was actually told to find a, nursing home that would take me as a full care patient and not to expect me to do anything else to go and die, that they did not have any reason for paralysis and or all the major symptoms because, idea of Covid, you kind of have been negative.

00:07:22:12 - 00:07:56:21

Marika

Oh, there were not any major spinal changes that they could find. imaging on imaging. And they say, supine imaging and, they weren't willing to do a number cruncher. and I said, no, I'm not okay with that. and started doing, my own physical and occupational therapy. I had enough due to the technology issues.

00:07:56:23 - 00:08:30:13

Host

We'd lost a lot of footage from the first interview, so we had to rerecord the entire one over again. So another extra thank you for Marika to do that for us. Now might be some content is repeated. However, you can consider that as a major outline for her paralysis events. So again, let's go back to the show. Thank you for having me.

00:08:30:15 - 00:08:59:23

Host

Yeah. So I know that last time, you know, really good to have often interest. But just wanted to start with a little bit of where your journey started. But I think, you know, mainly is when you trying to get diagnosed and how you get diagnosed. But I have always had some symptoms as far as hypermobility, subluxation.

00:09:00:00 - 00:09:38:24

Marika

And that has always just been part of normal life. I didn't really think I was different or, there was a reason to look, anywhere. It was just growing and, just deal with it. I was tall and gangly and, that's part of life. I didn't really start to think that anything was maybe out of the ordinary until, I started having chronic fractures a few years ago.

00:09:39:01 - 00:10:10:03

Marika

and then didn't even really start looking for, any help until my one of my children started having more symptoms. she started having, bruising and kind of out of the ordinary places for kids. She'd have a line of bruises across her knees, when she was on carpet and not falling. And she had a lot of bleeding out of the ordinary.

00:10:10:05 - 00:10:57:04

Marika

She went through hematology for her, without getting answers. While we were waiting for other testing. And, enough that we were concerned before, before other surgeries. Yeah. but no one was willing to treat symptoms for my kids until we had a familial diagnosis. So I went and started, working with, geneticists for myself. And they looked at me and my list of symptoms and, said, like, you have enough hypermobility and fractures, and, epilepsy is a diagnosis that I have already.

00:10:57:06 - 00:11:31:03

Marika

And you have enough going on. let's look a little bit deeper and then with your kids symptoms and chronic things going on, let's test for a couple of genetic symptoms or syndromes. And I had heard about EDS before and had asked her about it. I don't know about it specifically, but we'll put it on the list of things, to roll out.

00:11:31:05 - 00:12:15:21

Marika

and yes, didn't come up, and genetic difference, but Loeys-Dietz syndrome did. So can you explain a little bit, the please. Yeah. So Loeys-Dietz syndrome is a connective tissue disorder, and it's similar to EDS in that we have hypermobility. we have I have very classic, skin symptoms, similar to areas. In fact, I've been called very classic EDS skin and, used as a, teaching tool for doctors when they're talking about EDS skin.

00:12:15:23 - 00:12:49:16

Marika

it's very stretchy and elastic and soft, tears very easily. and I react to a lot of tapes and things like that. but in addition to that, though, we also have a high risk of aneurysms, are monitored through cardiology every year. make sure we don't have any, growth. And we do scans from head to pelvis.

00:12:49:18 - 00:13:31:21

Marika

you can have in your zones at any point through your body, any changes or symptoms. You are and they are doing scans. and typically families come in with EDS type syndromes or are diagnosed with Eds or EDS and don't have a genetic diagnosis until you have family members start dying. and it's random because you will have an aneurysm and it's anywhere from children to adults.

00:13:31:23 - 00:13:58:24

Marika

and they don't typically get a genetic diagnosis because it's the EDS community has stopped testing genetically further once you have an EDS diagnosis. so it's one that I'm very passionate about now about having genetic testing to rule out any further diagnoses. Once you have an ingenious diagnosis to make sure that you don't have any other things.

00:13:58:24 - 00:14:29:07

Marika

So Loeys-Dietz syndrome has a lot of similarities to ideas. It also crosses over with Marfan syndrome because of the cardiac side of it. some people have craniofacial differences. some don't. It's not a specific thing. Some of us have higher cardiac, involvement. Some of us don't. Some of us have more comorbidities and others have all of cardiac side of it.

00:14:29:07 - 00:15:31:00

Marika

There are currently, eight known, genetic variations. and we all have a wide variety within that. It wasn't, really discovered until 2005. I our family has the most rare of that. so we have one of the newest of those, so we have very little information about it. You go off of symptoms and we live day to day, enjoy it, and find joy in the little moments where we can, so we get what treatment we can and what preventative we can, but we live very much, moment to moment and, enjoy what we can because it's really hard to detect, like aneurysm, things like that.

00:15:31:02 - 00:15:58:18

Marika

so the something that you and your doctor are pretty much like the first few in your family that discovered it. So we know that my grandfather died of an aneurysm. we obviously he didn't have genetic testing, so we don't know if he had it or not. my parents don't have it. The gene. But two of my children and myself have it.

00:15:58:20 - 00:16:29:08

Marika

so it's possible that it skipped a generation. Right now, they're saying that that's not typical, not possible. And that I meant to novo. But again, genetics is new. Genetics is always evolving and we're always learning more. so we really don't know. it's always there will always be a question there as to whether it really was fat or not.

00:16:29:10 - 00:16:53:17

Marika

Does that answer your question? I don't know, yeah, because I was just curious. Things like you guys are the first sort of like first generation, like starting to look into the genetics side and also, very interesting. I think I kind of agree with you, the skip generation kind of thing because my parents, they can observe.

00:16:53:17 - 00:17:31:07

Host

Okay. But I had, inherited a lot of features from my grandfather. can go into a little bit on like the, the further symptoms that now you having, and I know that you see also experienced paralysis and, there wasn't really clear answer. Yes. I yeah. So for a long time about. Well, so growing up, I had, mostly hypermobility and, stuff.

00:17:31:07 - 00:18:14:15

Marika

Luxation, growing pains, joint pain. and then, chalked up to just growing and being a teenager. I did have a fracture that was, chalked up to an accident. I did have an accident at that point. horseback riding and, seizures started about that time. was diagnosed with about C, but it was also, I had head trauma at that same point and, had some spinal trauma, and that wasn't really treated, pelvic fracture and again, not treated.

00:18:14:15 - 00:18:45:16

Marika

We didn't find the fracture for six months. And it was, tore all the muscles in one flat in my groin. And, it took six months to work through. Pretty with that. Almost a year to have, Weight on that side again and was told that it was abnormal, but also that I was probably just overreacting to it.

00:18:45:18 - 00:19:23:22

Marika

And aside from that, a fairly typical teenage okay, until, I started having seizures that were fairly severe, up to a little under two years ago. I had, Cuddy kind of symptoms, which is similar to, problems, but I did have paralysis, and significant increase in numbness and, decrease in ability to move. And it was fairly out of the blue.

00:19:23:24 - 00:19:58:16

Marika

right before that, I had been doing hard core cardio and walking eight miles a day. so, significant exercise. I have been taking care of my kids with special needs and moving, taking the bus everywhere. So not little exercise, little movement. and but had also, slowed down some due to fractures. Yeah.

00:19:58:18 - 00:20:52:19

Marika

So, so I tripped over so fractures had started, had worked with ortho to take care of those but had slowed down some from those. Sorry. Let me back up a little bit. Have been doing all the exercise. Started slowing down due to fractures, but had started having numbness. over two week period, had gone from moving and essentially a normal human being to having total paralysis and ended up inpatient for six weeks, at the end of or during that time period, while I was inpatient, I had, I've had a few days where I was, I had complete paralysis and had, total nonfunctional, was on a ventilator for a couple of days.

00:20:52:19 - 00:21:24:06

Marika

And, then for no reason, does that mean, like, even upper extreme upper? I had the only thing I was moving at that point was my eyes. Yeah. and no communication. they didn't have me sedated at that point, but, if there was no function outside of that, so. So it was, like, fully awake. once, but no.

00:21:24:06 - 00:21:52:21

Marika

Yeah, yeah. I was not breathing on my own. I was not doing anything aside from just being scared. Yeah. yeah, they didn't have an, I guess for me about I wasn't I didn't ever have an idea, so I wasn't able to communicate what I needed or what I was in pain for, with or, just. Yeah, just scared.

00:21:52:23 - 00:22:19:01

Marika

I was just kind of laying there. yeah. It was just them coming in every day and saying, okay, move your feet, move your toes. Maybe your eyes or move your. It was just okay. I can move my eyes back and forth and sometimes up and down. and then eventually I was able to move my right hand again and started writing.

00:22:19:03 - 00:22:46:06

Marika

but for months, my left hand and arm, stayed in that process, and it took significant work to get back. my legs and lower body, has continued having problems since, so they still don't have explanation as well. You said you had, quite a quite a right, kind of what it was that I did.

00:22:46:08 - 00:23:20:06

Marika

They called it Cauda Equina symptoms, but it kind of was technically ruled out. So you can Google what correct one is, that technically was ruled out, because on a supine MRI, you would see, either compression of the spinal cord or a, change on the MRI. And they didn't see that. So the cutting was ruled out and nothing blaring showed up on MRI.

00:23:20:08 - 00:23:57:23

Marika

I do have spinal changes on my MRI, and with both, compression and, the way that my spine lines up. But it wasn't enough for any of the teams to say, okay, this is changing or a reason to change what's going on. they didn't do an upright MRI or, I can't think, condition they didn't do a prong or a side, sideline.

00:23:58:00 - 00:24:46:03

Marika

It didn't do a, much flexion. Thank you. flexion MRI. So it is only supine, CT and MRI. But I was impatient, which is fairly typical. Yeah. but over that whole period they also didn't do a multi, lumbar puncture. or anything further. and aside from CTS, MRI is and one very early, nerve connection study, which is unreliable, frankly, when it's so early into changes, nothing else.

00:24:46:03 - 00:25:15:09

Marika

So done. It was mostly just sit and watch. and when you have somebody reactions and changes, you can wonder what else is going on. Yeah. By the end of it, I was told the very last week I was told, well, you have FND functional neurological disorder because we don't have a reason. And this is the last thing that we can put a name on and insurance will cover.

00:25:15:09 - 00:25:50:02

Marika

You're saying now it was based off of we don't have a reason from, MRI. Say you've had and we're not willing to keep digging. It was not based off of the symptoms that I had or, the clinician in their, system who is, who worked with F and D at the time. She never came in and said, yes, this is symptoms of that.

00:25:50:02 - 00:26:19:10

Marika

And d it was just based off of, it's a catch all. You have more things adding up. let's call it this. so I started working with an F and D clinic after, intense about R, I actually went to their inpatient, rehab for a week, and then started with me working with outpatient clinic.

00:26:19:12 - 00:26:22:12

Host

So you have that kind of perspective from the other side of that I did for a little while. 

00:26:22:12 - 00:26:49:13 

Marika

Yes, I did work with them. I let myself go in, for a while all in. And theoretically, if you believe it, you'd be getting better. Right? Yeah. Kind of. What? They also told me. Yeah. So that's you. You were kind of like, give yourself a chance to believe it a little bit.

00:26:49:13 - 00:27:22:06

Marika

Yeah, I did, I went all in. Yeah, I, I done everything and I will do anything. I had kind of thought, the idea of similar diagnoses in the past, with,

00:27:22:08 - 00:27:59:17

Marika

Brain fog. It's real. With conversion disorder. I had been told some of my seizures had been conversion disorder related in the past. and or kanyes. Not a not a full optic. yeah. Well, I have an epilepsy diagnosis. some of my seizures were videoed and not recorded on, on an EEG at the same time.

00:27:59:19 - 00:28:44:01

Marika

But that was also after I had, just. Yeah, I was a little sore after I had have had spinal trauma. And so it's also a question whether that, you know, where that stems from. So now that spinal trauma was, was it just the fracture and then the lower waist down. so when I had the fracture, I actually land, came off of the horse and landed on a pole on my chest, and, my head flew forward and, I was wearing a dressage vest at the time.

00:28:44:03 - 00:29:10:06

Marika

It went through the vest entirely. cut like, tore through an inch and a half of foam and through my shirt. I. If I hadn't been wearing that, I wouldn't be alive. It would have cut through my chest. But, Well, so it's the watch. So it was a big trauma. and then it flew me backwards.

00:29:10:06 - 00:29:47:20

Marika

I landed on my back on the sand. so while my pelvis broke and it was it pretty? It was a decent trauma. And, that's when we started seeing changes in my spine and compression. and I then I had, seven rear end car accidents within ten years after that, which help spinal. Yeah, compression hither and whiplash and all of that.

00:29:47:22 - 00:30:24:01

Marika

Just like adds up but initially like that, in a hospital as that your spinal combat also would just. I was not actually inpatient at all after that. Did you ever get it. And I if they didn't even send me to the ER, I was not evaluated at all after a lot what happened like so I was raised in the country and as they kept me awake and as long as I wasn't unconscious, they didn't send me.

00:30:24:03 - 00:31:00:21

Marika

So here in the country to just keep you awake. Yeah. I shoot my trainer. I literally hurt her 17 year old, just annoying me until she could come inside and call my parents and and that's what they did. And my parents took me home and. Okay, do some crunches until you walk again. And we did physical therapy because it was annoying and, I finally did an MRI because it never got better.

00:31:00:23 - 00:31:31:21

Marika

but they never actually had it evaluated. So if you think that if it never really went to the yard and that always had I had an MRI at that initially and actually been evaluated properly at that point. More damage may have been seen initially. Yeah, yeah. So because that didn't really go to the ER or go to any kind of hospital.

00:31:31:23 - 00:31:57:22

Host

So that means like you know your accidents trump most of like not really quite record. Right. Oh yeah. I'm sure a lot of it is not on record. So that that. Yeah. Do you feel like you know, accidents have ever gone to the ear? so no, but now I'm not typically treated in the E.R. anyways.

00:31:58:02 - 00:32:31:24

Marika

So. Yeah. it's hit or miss. So you've been where it's going now? Now that's a whole another question. yeah. I think, part of, yeah, I had, I had, I had it on record initially. It probably would have continued that line and been more, more apparent or more documented. I'm more, treated long term.

00:32:32:01 - 00:33:26:15

Marika

Yeah, yeah. And hospital thing. I'm not really good at that time. no. But, so can you talk a little bit about how, like, how does this physio have worked with you think Bethany physio. how have they worked with me? They have, I think they've tried their best with the understanding that they have. but it's a hard balance between my physical and their understanding.

00:33:26:17 - 00:34:07:01

Marika

because I think at a level they believe that there's something going on. I frequently get questions from them. I am still seeing physio. and I frequently get questions about, like the GI surgery that I had recently about why it's taken a year and a half to have it done, and why I don't have pain meds for the cost me or why, when I don't have, I was inpatient for IV antibiotics just a week ago.

00:34:07:01 - 00:34:40:24

Marika

And why urology refused to do treatment for it until it got to that point. and it's this like, conundrum of the physical things that they see, but this then they slide into the. Well, at least you tried walking today and.

00:34:41:01 - 00:35:06:10

Marika

I'm not sure. Where that balance is. So how they work with me, is a lot of, talking and,

00:35:06:12 - 00:36:01:03

Marika

Typical. how do I describe it? Typical exercises you would find in a rehab that, would work with someone who had a broken bone or a, joint replacement that just needs to be strengthened and worked, to increase and not necessarily to, maintain what you have already or what you have left. and the conversations we have are typically around.

00:36:01:05 - 00:36:38:08

Marika

do you more than you think you can or changing your perspective. And. It's almost as if she tries to be psych. yeah. And physio. I was trying to think that if it's almost as if she tries to do both.

00:36:38:10 - 00:36:44:16

Marika

And not that I don't know that she's,

00:36:44:18 - 00:37:20:10

Marika

I don't know, I don't want to say she has a long time because I don't think she does. But I don't know that she has the full understanding of what's actually going on. Yeah, or has actually seen all of the imaging. I really feel like she doesn't have the full picture and isn't really part of the team that she thinks she is, if that makes sense.

00:37:20:12 - 00:38:00:16

Marika

It's kind of a dream job. Yeah. Yeah, exactly. She's doing the job of FND and that is that. And then that includes somehow distract people. It is a lot of distraction. So yes, I know that. Yes, distraction is a good word. Yeah. Because I know enough distraction and negating and. Yeah. Manipulation. Yeah. the one thing that differentiates show differentiate between EV and, and, and having real issues is that they have inconsistency.

00:38:00:16 - 00:38:39:16

Marika

They can't write if you are not. So do they see any inconsistency? the one time that I was told I had an inconsistency, it was when I had significant, tremors, and I was actively spasming. And it just felt like it's quite concerned. That was like a lot of activity. Physio. It seemed not they don't need, you know, because they work was definitely patient, very focused.

00:38:39:18 - 00:39:14:23

Marika

Yeah. And not that there aren't patients that need that. There are two of them and it shouldn't be negated. But they need to understand when to use that and when to send patients to a different physio. Which patients need them and which don't tell what what do you think about some people statements like you should work, you're meant to or they consider a conversion that's like mental disorder, right?

00:39:15:00 - 00:39:43:00

Marika

And then, work on this or work on functional issues and, physical issue at the same time. I don't think it's a bad thing, per se, because at some level, we all can work on our mental health. I really do think that it's a good thing to have a therapist, especially when you have chronic illnesses.

00:39:43:02 - 00:40:17:19

Marika

it takes a big toll. it's not easy to work with a medical system consistently, especially when you're gaslighted all the time. However, I don't feel that it is appropriate to have providers consistently tell you that it is in your head, and I don't feel that it is necessary to have you see a therapist just in order to have physical, medical care.

00:40:17:21 - 00:41:03:22

Marika

And that is where patients with FND or put, they are required to see therapists and psychiatrists in order to have any other medical care. And that is not just with, and that's also with other conditions too. but it is very prevalent with that fantasy. And I don't feel that that is necessarily appropriate for everyone. and if you've had that label at any point that follows you, and it takes it further toll on other that many people.

00:41:03:24 - 00:41:39:07

Host

So when, did your symptoms that you feel like is more physical issues perhaps. they have always continued progressing. I mean some progress after inpatient on my own. I did work with physio for a little bit, but it was mostly on my own that I made progress doing ADLs. and spending time with my kids and being outside, trying, sorry.

00:41:39:09 - 00:42:16:02

Marika

Trying to breathe. Trying to do the things that I love. Gardening and, forcing myself photography. Forcing myself to, spend time up and, figuring out how to adapt to life that I was told was incompatible with where I was at. I didn't have health, really at home when I was discharged. And I was essentially left to do it on my own.

00:42:16:04 - 00:42:47:16

Marika

and so I adapted and I figured out how to make it work. in fact, two weeks after, not even two weeks, right after I discharged, my daughter was inpatient, and have major surgery and then emergency surgery and was in ICU. And then my husband was in not life threatening accident and was inpatient for a month.

00:42:47:16 - 00:43:31:07

Marika

And then in rehab, actually the same rehab. so I literally was thrown into it and I, you know, I was. I heard a lot of the, stereotypical things that we loved so much. you're so strong. And I'll pray for you. And, how do you do it? And I learned very quickly that I hate those, so much because they are very empty and people don't know how to react to us.

00:43:31:09 - 00:44:11:11

Marika

They don't know what we live day to day for even moment to moment. And they don't know how to help us. they even when someone works in the medical field, it's different. And they're not comfortable asking, to do that, do you feel it kind of, hurts you more was stereotypical things that from the medical people or just general populations?

00:44:11:13 - 00:44:40:18

Marika

I actually get more from them from people in the medical field than I do from the general population. I get more stereotypical responses and more people just pushing my chair than like my man in a wheelchair, saying, oh, I was just helping. I'm a CPA or CPA. I was just helping you up the ramp, and I know how to help because that's what I do from my day job.

00:44:40:20 - 00:45:15:07

Marika

Instead of asking, say what I'm the. I often work with someone and I am willing to help you. Would you like help? Well, most of the general population is more willing to just ask me. Kids will just come up and ask me, hey, why are you different? And I'm much more willing to have a conversation with someone who is willing to ask a question than to touch me.

00:45:15:09 - 00:45:53:07

Marika

Yeah, if I'm to push me and get in my space to stand behind me where I can't look at them and it becomes very uncomfortable or a pain point for me. then to just have a conversation with me like a normal person. Yeah. But yes, I find it much more common for someone in the medical field, whether it's a CPA or, M.D. or a surgeon.

00:45:53:09 - 00:46:35:14

Marika

Yeah, I get a lot more stereotypical and, mocking even, from people who feel like they have all the knowledge or get paid more or should get paid more. but don't live it or aren't willing to learn. Yeah, yeah. So I know that, we kind of previously talked a little bit more about, like with your circle that you had upright and my.

00:46:35:16 - 00:47:22:22

Marika

Yeah, I did have, well, I didn't have an upright. I had a flexion extension. And what's that helpful to tell anything. the doctor who looked at it did feel like it was abnormal and was unhappy with it, but there was only so much tweaking information that we could gain from it. because the tech that, was there during it was really unhappy with how far eye movement I had during it and actually blocked the movement, that I was able to do during the reflection and extension, both directions, which is the point of it.

00:47:22:24 - 00:47:51:13

Marika

So, there's only so much that we can actually see. And in the images. And I haven't had an updated since, so that was almost two years ago. That was two years ago. That was actually before all of my more complex, symptoms and everything happened. So, I haven't had one since, and, I would be surprised.

00:47:51:15 - 00:48:18:10

Marika

Not surprised if more showed up on it now, but, you said you as an Asian, insurance doesn't want to cover another one, but also just getting orders for one. even neurology now doesn't want to do an updated supine event. They don't. Yeah. I don't feel like there's obvious reason for an updated supine. Yeah. So. Yeah.

00:48:18:12 - 00:48:50:10

Marika

yeah. Getting, flexion extension is a bigger fight than a supine. So it's, it's apparently pretty clear. if they shocked with your movements that often, like, you know, people have mobility or they are having stability. Right. Yeah. I've had decreased movement. But, my movement is still within normal range because I had I have so much hypermobility before that no one deems it inappropriate.

00:48:50:16 - 00:49:19:11

Marika

So why bother? Why bother check. Why bother? Like and you know, within normal range. Is it normal ranges. Oh other conversation. Normal range is not normal for everyone. Normal limits are not normal for everyone. Yeah I like to explore just a little bit. Yeah. You know, and so like, you know, with normal limits at the time was it.

00:49:19:11 - 00:50:00:13

Marika

And then the radiologist especially. Yes. Do you think the relationship between radiologist and neurology and the your actual imaging, that kind of tells something for you, but especially always the normal. So I think with everything, whether it's, lab work or radiology, I think everyone is covering themselves. there's margin of error. And there is a,

00:50:00:15 - 00:50:57:17

Marika

Limitation on how much everyone knows. there are so many different conditions that, radiologists can only be knowledgeable in so many areas, and they do have to work within their limitations, and they do have to work within their range of normal. However, they also tend to be on the side of caution. And when when reports are written that something is within the range of normal or within normal limits, and a doctor can go look at it and say, actually, I disagree with that.

00:50:57:19 - 00:51:37:03

Marika

something needs to be done. But a doctor won't because the radiologist reads it as normal. There's a conflict of interest for the patient. and and not everyone, not everyone will do that. And that makes sense. Not all of the doctors will go back and look at imaging again once the radiologist has looked at it. Regardless of what the radiologist says, they will default to the radiologist report.

00:51:37:05 - 00:52:19:16

Marika

So that to the radiologist. Initially. and so it provides this conflict of interest for the patient. And, if there's an issue like spinal pressure, whether or not there's a major, obvious indentation in the spinal column or a spinal cord, or a, effusion that needs to happen or something to be removed or spur or something.

00:52:19:18 - 00:52:37:22

Marika

that was not noted or, whatever it may be. It can it can be problematic. And and.

00:52:37:24 - 00:53:26:08

Marika

And patients are left to say, well, is it worth getting a second opinion? is it worth getting and letting it get worse? Or do I just trust that nothing is wrong and that what I'm experiencing isn't actually true? That this is now in my head and I am essentially, what I'm now being told is in my head isn't or what I'm experiencing is a real and.

00:53:26:10 - 00:54:13:17

Marika

It's creating a disservice to patients. It also tends I feel like it's also a disservice to radiologists. They've had training and say, okay, where is their training actually going? If you're not writing reports that are accurate and true, what is the training worth? Yes, yes, you have to stay within your limits and yes, you need to follow laws and follow your, limits with insurance and everything there.

00:54:13:17 - 00:55:04:15

Marika

But if you're not willing to say, hey, there's something actually wrong on this, what is your training doing? Yeah, I, I feel crazy. Radiologists with wasn't bought for reports. with multiple imaging, same imaging from the more detailed side come out of mobile and remarkable. And have you actually seen in a neurosurgeon and, they or some of them are similar in that part of like, you know, neurology, versus radiology.

00:55:04:17 - 00:55:37:14

Marika

But yeah. So based on the reports, I've had a consult, in person with one who spent five minutes in the room with me and looked out one supine scan and said, there's nothing to be done here. go see another person and just throw me off. I saw one, all right. Emailed with one who, looked at Chiari specifically and possible CCI and said, you have way too much going on.

00:55:37:14 - 00:56:14:08

Marika

There's no way this is Chiari. keep digging. And and, then I worked up, starting a console with another high, highly recommended surgeon and didn't have the finances to finish that consult. without knowing that I could actually have all of the imaging viewed and have a full, be able to give all of the information, that I've actually gained.

00:56:14:10 - 00:56:58:01

Marika

from my perspective, also, in addition to the radiology reports and the doctor notes that I don't feel are actually accurate. I didn't feel comfortable paying out of pocket so much to get a possible report. And then not necessarily be actually able to talk to him. so I haven't actually had that done. but most of the neurosurgeons that I would be comfortable with working on my spine are, all out of pocket and don't take insurance.

00:56:58:03 - 00:57:37:24

Marika

So it's not it's not, inexpensive. Yeah, well, you have an expensive problem. Yes. And it's not my only one. And seem like there's no between now. it's all or nothing. And if you taking that knowledge, coming back to the current care team. Yes. Does that help your care? the current knowledge of all or nothing or sort of like having some answers, some help.

00:57:37:24 - 00:58:00:16

Marika

Well, I think it's consistent with my care, and I don't know that it really helps, but I think it's consistent. The majority, it does tend to be all or nothing. I do think that the,

00:58:00:18 - 00:58:48:05

Marika

Tend to write off a lot and push off to other people if it's not something that they specialize in or it's not very specific sometimes to their specialty, but it's not their problem. and if it overlaps with anything else and they don't have to deal with that. Yeah. so like from their GI and colostomy to, and neurology, neurogenic bowel that doesn't have movement at all to androgen bladder, and super pubic plus or

00:58:48:07 - 00:59:22:21

Marika

Super poor catheter to even movement. and then, yeah, they had four providers tell me that my team is just waiting for me to die. it's no one's willing to oversee or treat. do you think your neuro seems to be the one that overall can see? Are we. If they can see the whole picture, do you the overall wants to kind of help him?

00:59:22:23 - 01:00:02:02

Marika

right now, my PCP actually does more than anyone else. my PCP in my ortho, and, colorectal, do the most right now. but they tend to also go in, kind of a circle. They go in periods they do more than others, and then they take turns. And, yeah, I have a surgery and then with one and then another and then.

01:00:02:04 - 01:00:32:12

Marika

Yeah. Yeah. So it's like they, you know, they issue with sort of like it's there. Yeah. There's something underlying. No. really. Like no one's willing to dig on the underlying or the secondary genetic that's sitting there on my genetic testing that, I have another genetic disorder that's there. Don't, it needs further testing, and no one's willing to dig into it.

01:00:32:14 - 01:01:10:17

Marika

and could be adding to symptoms. And although it states it is new enough and has co-morbidities associated with it, but I don't have enough of the, severe cardiac to have everyone, anyone say, yes, this is all associated and there aren't enough. Well, there are co-morbidities associated with those needs. I have the co-morbidity symptoms so much more severe than the main cardiac currently.

01:01:10:19 - 01:01:41:20

Marika

And so it's easier to say, no, these aren't related. It you're not our problem. And all the other specialist. It's easier to say we don't know anything about those dates. We don't do connective tissue. We don't do any of those other specialties go away. So yeah, I it's easy for me to get past one to the other. it's the same way for my kids.

01:01:41:20 - 01:02:25:09

Marika

If you don't have a familial diagnosis, we won't treat you either. So, Yeah, I spend most my days, to finding the joy in between and what we can do day to day to make it better. And how to, work with it. And when I have, but in between those, I also get to field my kids questions of how long do they have until they have a wheelchair, and how long do I have until I, how long do they have until they aren't here?

01:02:25:11 - 01:03:20:09

Marika

So that's the reality of, chronic conditions and not getting treatment and and, and you kind of know the underlying causes there. It's the problem of no one stepping to it. Right? Yeah. It's the problem of no one being willing to dig and not having funding to the combination of those. Yeah, yeah. can I, I know, I know you have them in this one time, but I think we'll dig pretty deep into this whole entire system, and how we just become sort of like bones and missed and because you the really good care is really expensive, and there's just no way.

01:03:20:11 - 01:03:57:01

Marika

And that takes time. Yeah, it takes time to research and to have enough people to have a good study. And frankly, so rare diseases don't come. Do you feel that right now some of us think this panel issues that it's really kind of underrepresented. It I think that there are more of us probably out there than I really talked about.

01:03:57:03 - 01:04:40:04

Marika

it's easy, easier, I think, than it's discussed to brush under the table. Because we typically don't have the finances to go get treatment. Yeah. insurance doesn't cover it. It's. Taught that in our home, we don't get the right imaging, or we're doing the research on our own, and it takes ten years to get the correct diagnosis.

01:04:40:04 - 01:05:02:12

Marika

Or in your case, you don't have the direct correct diagnosis until you're in surgery. who how many people get that you issue? How many people have a surgeon who actually will do that and tell them what's going on?

01:05:02:14 - 01:05:06:01

Marika

And by then.

01:05:06:03 - 01:05:36:15

Marika

What has happened? Finding similarities? Do we have to try to, For a long time, I didn't feel similar at all. in a lot of ways, I don't feel similar. but there's probably more similarities than I want to admit.

01:05:36:17 - 01:06:27:21

Marika

There's small traumas every day. There's three traumas and retraumatizing. Every time we transfer. And that's probably the difference that a lot of people don't recognize. or many people don't recognize with our spinal or with our spine. And the instability and not having that stability every time. You get in the car or you transfer and you don't have that stability, you're getting that.

01:06:27:23 - 01:07:12:07

Marika

Really traumatization. And it will affect you over time, sometimes even right away. how much are we similar to traumatic spinal cord injuries? I think there's more similarities in that we have a lot of, co-morbidities with it. so the things that come along with it, like problem bladder, a lot of the movement is spasms of similar,

01:07:15:24 - 01:07:32:17

Marika

A lot many of us, it happens fairly fast for some of us. And we don't always know why.

01:07:32:19 - 01:08:18:06

Marika

Obviously not knowing why is different, but, Having that fast change, Can is from trauma and, our spine changing. Do you then acknowledging that it's important. Yeah. You know, often that there was talk about grief. was my neck spinal cord injury. but not traumatic or specialized chronic issues that constant with those minor traumas. That means you have so much, so much.

01:08:18:08 - 01:08:58:07

Marika

You know, we don't allow ourselves to grieve. Yeah. We're not allowed to grieve. We haven't had trauma, right? You know, quote unquote, having had trauma bring out a lot of grief. So why? Go to therapy, fix yourself. But don't grieve as you haven't had a trauma. It is important to. Grieve and to let yourself work through that.

01:08:58:13 - 01:09:04:13

Marika

Because it is a change. And it is.

01:09:04:15 - 01:09:54:13

Marika

A loss that you have had from the previous self. I used to see. Do you think that it kind of hurts emotionally more if having these treatments repetitively or not getting recognized by any of these, by the medical, I think I actually have more trauma every time I see, Physio because their goals are different than mine and they don't acknowledge.

01:09:54:13 - 01:10:03:01

Marika

Right? Their goals are very much,

01:10:03:03 - 01:10:28:15

Marika

Stand up and walk. Stand up more times and faster and walk farther and longer and do more. And I am be functional and be,

01:10:28:17 - 01:11:05:16

Marika

Sure. If you want to talk about walking, great. But let's not make it the main focus. Like I want to be functional and will have less pain. I want to transfer safely. I want to not fall in the shower. I want to not slide between transfers and have to sit for four hours until someone comes home. I want to not have my shoulders so blocks and cry.

01:11:05:18 - 01:11:42:07

Marika

But what I hear is, oh well, at least you tried today. And oh well, good on you. Can you at least straighten your legs on that press? Okay. And I don't I don't want to on your mouth, but do you feel like, in a sense that you don't feel seen for you this morning? Because it's not what I'm there for.

01:11:42:07 - 01:12:26:20

Marika

What they're wanting me there for is different than what my body's physically capable of being there for. And I go because that is how I get the rest of my medical care. So. That's it. Now, going into physio also means that I am not able to get home health with the other conditions that I have, because if I'm able to go to physio, this is a big deal because in order to go to physio, I also don't two appointments two days before or after.

01:12:26:22 - 01:13:09:01

Marika

It takes that much out of me and it takes that much to recover. But if I am able to get out of the house for appointments, then insurance deems me not necessary to need help at home with any of my other conditions like help with cost, me or change Elizabeth this week at home, which means that I also have to go do that same hour and a half drive for everything else.

01:13:09:03 - 01:13:41:22

Marika

I do see that the fact people with actual physical diagnosis that also go to doctor insurance plan doesn't care. But if I don't go physio, if I don't follow through with a ten day plan, then I don't get that care. So our medical system is twisted because that's on my chart. It will always follow me and, and and now I know what that FDA has said.

01:13:41:24 - 01:13:53:06

Marika

A way to say that it will cool is it's towards right. So that makes it even more right.

01:13:53:08 - 01:14:22:14

Marika

Yeah. And I've been told, you know, that card has been played. And then they have to say that you have to have some kind of psychological trauma or. Yeah. And not to say that that isn't there. I see a therapist. I will always be a therapist. But,

01:14:22:16 - 01:14:49:18

Marika

I've had too many doctors tell me that's not the case. Too many therapists and psychiatrists tell me that's not the case. And when psychiatry tells me that's not, I don't see how doctors can continue to tell me. But then come in again. No.

01:14:49:20 - 01:15:28:12

Marika

so that's the rage. Every day there's joy, though, and then finding the things where I can't and what I can do. And, there will always be something that I can, you know, that I can't do. Whether that is, laughing with my kids or, taking a gorgeous image of someone who didn't think they would ever have that confidence in myself again, means everything to me.

01:15:28:14 - 01:16:08:23

Marika

So, Yeah, I like that. so you see that? I mean, I always feel like the perception of you where they've been. There's nothing, you know, kind of correlate with. With what? These little things that you. I have. And I do think that, you know, you're doing the best you can. We're all doing the best we can, but it doesn't matter where we are or what trials we have or foils or.

01:16:09:00 - 01:16:42:16

Marika

What we're doing in life. We're all trying to do the best we can. And when we lift each other, we will climb higher. Yeah. And then meanwhile, I'm hoping that this, this entire conversation can somewhat move the needle a little bit and can get us to even just a little bit better care, you know? Right, I hope so, I hope it'll help someone else.

01:16:42:18 - 01:17:15:04

Marika

That's true. Hope someone who is listening can also feel somewhat weirdly and not feel alone. And that's really, yes, always. And I'm always happy to share because that is my post. My goal is to help someone else know that they're not alone. Yes. Awesome. Thank you so much. All right. Good to be here. And the to have the conversation.

01:17:15:04 - 01:17:55:09

Marika

And I know we we had really difficult you know topics to talk on. And this is something that I feel like the whole society needs to pick. And then we need to be. And so hopefully there are more medical professionals who will care for us. And thank you. We can of course, thank you for having me.

01:17:55:11 - 01:18:44:10

Marika

I love the episode. I love to have to keep fighting for the answer and gaining more knowledge about your diseases. And don't forget to visit our website at ThrivexStrive.com/Occult-Awareness. I do think there was a dash... to really access resources and read more about this topics, and also support our mission. If you found this episode in any way, enlighten you, please consider subscribing to our podcast on your favorite platform and leaving us in review, and your feedback will help us grow and reach more listeners.

01:18:44:11 - 01:19:32:24

Host

Follow us also on social media. A called awareness with underscore here to stay connected and informed about our upcoming episode. Also, remember your story matters. The health matters. You are not alone in this journey. Until next time, keep striving for knowledge and awareness. Bye for now.