Occult Awareness

Part 1: Unveiling the Unseen: Aella's Fight for Diagnosis Amidst Medical Gaslighting

May 20, 2024 Amy Wang-Hiller Episode 3
Part 1: Unveiling the Unseen: Aella's Fight for Diagnosis Amidst Medical Gaslighting
Occult Awareness
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Occult Awareness
Part 1: Unveiling the Unseen: Aella's Fight for Diagnosis Amidst Medical Gaslighting
May 20, 2024 Episode 3
Amy Wang-Hiller

Send us a Text Message.

In this gripping episode of Occult Awareness, Aella Askew bravely shares her harrowing journey through a maze of undiagnosed chronic illnesses and medical gaslighting.

From a childhood filled with pain and dismissed symptoms to a life-altering spine injury, Aella's resilience shines through as she fights for answers and validation. Join us as we delve into the complexities of invisible illnesses, the power of self-advocacy, and the importance of finding community and support. 

  • Childhood and the Circus 
    • Aella Askew, a woman with Ehlers-Danlos syndrome (EDS) and other chronic illnesses, shares her lifelong struggle with pain and medical invalidation. 
    • Aella's journey took an unexpected turn when she joined the circus, where she found a sense of belonging among fellow misfits. However, her physical ailments worsened over time, leading to her semi-retirement in 2018.
  • A Life-Altering Injury 
    • While working as a metal fabricator, Aella sustained a severe spine injury exacerbated by a chiropractor's mishandling, leaving her hospitalized and homeless.
    • Aella describes her struggles after the injury, including homelessness, reliance on Medicaid and disability benefits, and the challenges of finding affordable housing. 
  • Medical Gaslighting and Misdiagnosis
    • Aella discusses her experiences with medical invalidation and misdiagnosis.
    • Aella talks about her advocacy efforts and how she became her own "mama bear" in seeking answers and support. 
    • She discovered the importance of community and connected with others with EDS, learning about ring splints and other resources.
  • PANS/PANDAS Diagnosis
    • Aella shares her various diagnoses, including PANS/PANDAS, a neuroinflammatory disorder that can cause a range of symptoms. 
    • She discusses the cause of her PANS/PANDAS and the challenges of managing its symptoms, such as OCD, rage attacks, and tics.
  • Ongoing Challenges and Medical Gaslighting 
    • Aella expressed her frustration with the medical system and the lack of understanding and validation she receives from doctors. 
    • She details specific instances of being dismissed and misdiagnosed, highlighting the impact this has on her mental and emotional well-being.
  • Living with Chronic Pain and its Impact on Daily Life 
    • Aella discusses the difficulties of finding effective treatments and the constant struggle to manage her symptoms. 
    • She also shares her experiences with physical therapy and the limitations she faces due to her condition.


Don't miss this eye-opening conversation that sheds light on many's unseen struggles.

Support the Show.

Please follow us on social media @Occult_Awareness, and join us on Facebook.
Sign up newsletterhttp://occultawareness.com/ & watch the video format on Youtube @OccultAwareness

Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.

Support Us on Ko-fi: https://ko-fi.com/occultawareness

If you found this episode valuable, please consider supporting us on Ko-fi. Your donations help us continue to raise awareness and share important stories.

Thank you for your support!

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Show Notes Transcript Chapter Markers

Send us a Text Message.

In this gripping episode of Occult Awareness, Aella Askew bravely shares her harrowing journey through a maze of undiagnosed chronic illnesses and medical gaslighting.

From a childhood filled with pain and dismissed symptoms to a life-altering spine injury, Aella's resilience shines through as she fights for answers and validation. Join us as we delve into the complexities of invisible illnesses, the power of self-advocacy, and the importance of finding community and support. 

  • Childhood and the Circus 
    • Aella Askew, a woman with Ehlers-Danlos syndrome (EDS) and other chronic illnesses, shares her lifelong struggle with pain and medical invalidation. 
    • Aella's journey took an unexpected turn when she joined the circus, where she found a sense of belonging among fellow misfits. However, her physical ailments worsened over time, leading to her semi-retirement in 2018.
  • A Life-Altering Injury 
    • While working as a metal fabricator, Aella sustained a severe spine injury exacerbated by a chiropractor's mishandling, leaving her hospitalized and homeless.
    • Aella describes her struggles after the injury, including homelessness, reliance on Medicaid and disability benefits, and the challenges of finding affordable housing. 
  • Medical Gaslighting and Misdiagnosis
    • Aella discusses her experiences with medical invalidation and misdiagnosis.
    • Aella talks about her advocacy efforts and how she became her own "mama bear" in seeking answers and support. 
    • She discovered the importance of community and connected with others with EDS, learning about ring splints and other resources.
  • PANS/PANDAS Diagnosis
    • Aella shares her various diagnoses, including PANS/PANDAS, a neuroinflammatory disorder that can cause a range of symptoms. 
    • She discusses the cause of her PANS/PANDAS and the challenges of managing its symptoms, such as OCD, rage attacks, and tics.
  • Ongoing Challenges and Medical Gaslighting 
    • Aella expressed her frustration with the medical system and the lack of understanding and validation she receives from doctors. 
    • She details specific instances of being dismissed and misdiagnosed, highlighting the impact this has on her mental and emotional well-being.
  • Living with Chronic Pain and its Impact on Daily Life 
    • Aella discusses the difficulties of finding effective treatments and the constant struggle to manage her symptoms. 
    • She also shares her experiences with physical therapy and the limitations she faces due to her condition.


Don't miss this eye-opening conversation that sheds light on many's unseen struggles.

Support the Show.

Please follow us on social media @Occult_Awareness, and join us on Facebook.
Sign up newsletterhttp://occultawareness.com/ & watch the video format on Youtube @OccultAwareness

Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.

Support Us on Ko-fi: https://ko-fi.com/occultawareness

If you found this episode valuable, please consider supporting us on Ko-fi. Your donations help us continue to raise awareness and share important stories.

Thank you for your support!

00:00:00:00 - 00:00:43:04
 Amy (Host)
 Welcome to Occult Awareness where we illuminate the unseen challenges in health care. I am your host, Amy White, and each episode we explore twisting paths to diagnosis and challenges faced by those with condition that don't show up at the standard checkup for EDS, CCI, and beyond. We are here to bring you stories from those on the complex journey towards diagnosis.
 
 00:00:43:06 - 00:01:17:15
 Amy (Host)
 We also feature insights from health professionals who navigate these rare disorders. Join us as we uncover hidden truth. Advocate for the heart and empower you to take charge us. White House.
 
 00:01:17:17 - 00:01:36:24
 Amy (Host)
 Today we have Ella joined us to tell her story and her battle with all the chronic illnesses and the diagnosis journey. So welcome. Introduce yourself. Introduce yourself a little bit, and just tell us a little bit background on yourself.
 
 00:01:37:01 - 00:01:39:00
 Aella Askew
 Sure, sure.
 
 00:01:39:02 - 00:01:44:03
 Aella Askew
 so I am I Aella Askew I am.
 
 00:01:44:05 - 00:01:47:10
 Aella Askew
 Well, I've got quite a number of them.
 
 00:01:47:10 - 00:01:52:08
 Aella Askew
 It's kind of like Pokemon. You catch them all.
 
 00:01:52:10 - 00:02:00:07
 Aella Askew
 I, so I've got I've got an interesting story.
 
 00:02:00:09 - 00:02:02:19
 Aella Askew
 my my my my.
 
 00:02:02:19 - 00:02:05:14
 Aella Askew
 Journey begins at birth.
 
 00:02:05:16 - 00:02:09:18
 Aella Askew
 But I didn't knew that. I.
 
 00:02:09:18 - 00:02:13:22
 Aella Askew
 I have eds it's genetic, but you just don't.
 
 00:02:13:22 - 00:02:14:18
 Aella Askew
 Know it.
 
 00:02:14:20 - 00:02:16:21
 Aella Askew
 And, it's kind of like.
 
 00:02:16:21 - 00:02:21:20
 Aella Askew
 That whole, you know, you you grow up in pain.
 
 00:02:21:20 - 00:02:22:16
 Aella Askew
 And and you.
 
 00:02:22:16 - 00:03:06:01
 Aella Askew
 Have that whole story where you're, you constantly telling your mom like, oh, I'm hurting and, and constantly getting in that little accident and bruises and bumps and always sick. and, it just it never got picked up. But, I do have, and very early, like, when I was a, like, migraine diagnosis and, I actually considered that,
 
 00:03:06:03 - 00:03:09:20
 Aella Askew
 I have a very vivid early.
 
 00:03:09:20 - 00:03:11:10
 Aella Askew
 Memory of my mother.
 
 00:03:11:10 - 00:03:22:14
 Aella Askew
 Turning down a tilt table test at. I considered that my lost opportunity. It was rough.
 
 00:03:22:16 - 00:03:32:11
 Amy (Host)
 how old was, how old was that? Like, she actually got a she actually got a full tilt table.
 
 00:03:32:13 - 00:03:47:10
 Aella Askew
 yeah. And I remember her saying to the doctor, she doesn't need that. We know she has migraine because my mom had migraines. Yeah.
 
 00:03:47:12 - 00:03:49:24
 Aella Askew
 So and I remember my parents.
 
 00:03:49:24 - 00:03:55:08
 Aella Askew
 Being, very to suck it up. You know, there were many.
 
 00:03:55:10 - 00:03:57:20
 Aella Askew
 Many times that I thought I should go to the.
 
 00:03:57:20 - 00:03:59:22
 Aella Askew
 Hospital and.
 
 00:03:59:24 - 00:04:00:18
 Aella Askew
 They were like.
 
 00:04:00:24 - 00:04:06:09
 Aella Askew
 Just good embarrassed, you know. And
 
 00:04:06:11 - 00:04:09:23
 Aella Askew
 Like, I remember the one time I ended up with stitches.
 
 00:04:09:23 - 00:04:12:14
 Aella Askew
 On my forehead. I cried the whole.
 
 00:04:12:14 - 00:04:14:22
 Aella Askew
 Way to the hospital saying, no stitches.
 
 00:04:14:22 - 00:04:17:17
 Aella Askew
 Just a Band-Aid.
 
 00:04:17:19 - 00:04:20:12
 Aella Askew
 like, I ended up getting started.
 
 00:04:20:14 - 00:04:26:19
 Aella Askew
 But, like, my parents were, like, not having it. They hadn't strapped.
 
 00:04:26:19 - 00:04:29:02
 Aella Askew
 Down to that bed. They were just like.
 
 00:04:29:04 - 00:04:31:14
 Aella Askew
 No, you know.
 
 00:04:31:16 - 00:04:32:18
 Aella Askew
 I ended up kicking the nurse.
 
 00:04:32:19 - 00:04:37:18
 Aella Askew
 In the end.
 
 00:04:37:20 - 00:04:40:21
 Amy (Host)
 Yeah. Let's just add. Yeah, let's just add a little visual.
 
 00:04:40:23 - 00:04:42:21
 Aella Askew
 Yeah. That's a great idea.
 
 00:04:42:23 - 00:05:17:09
 Amy (Host)
 Yeah. yeah, I am, so I am, woman. Asian woman. And I have a blue dark blue navy blouses and also with a pink hat, fallen short hair, short hair. yeah. And, Yeah. And I'm in my power wheelchair, and I do have a front mouthpiece for giving me, ventilation of air ventilator, and, and I think I've done.
 
 00:05:17:11 - 00:05:19:18
 Amy (Host)
 Yeah, I think I've done.
 
 00:05:19:20 - 00:05:42:21
 Aella Askew
 and, and and, I currently, a, white woman with green hair and, and, I also have pink headphones on, and, I'm wearing a, a a c collar, a neck brace. It's a hard neck brace. And, I'm wearing a pink.
 
 00:05:43:01 - 00:05:55:17
 Aella Askew
 T shirt, and, I have a particularly fun one on today. It's, a little spaceman with a pot flag, and and it it it it says.
 
 00:05:55:17 - 00:06:03:12
 Aella Askew
 Official gravity tester. yeah, it's a good one. Yeah. Thank you.
 
 00:06:03:14 - 00:06:08:19
 Amy (Host)
 We can kind of, like, go back to continue the story as maybe you were.
 
 00:06:08:19 - 00:06:11:18
 Aella Askew
 Yeah. Yeah.
 
 00:06:11:20 - 00:06:15:15
 Aella Askew
 so. Yeah. a typical EDS kid.
 
 00:06:15:15 - 00:06:38:24
 Aella Askew
 Lots of injuries growing up. and just parents that didn't get it. I, unfortunately, later in life connected the dots, and, I have early autism that I. Gnosis. and and.
 
 00:06:38:24 - 00:06:40:04
 Aella Askew
 I also have.
 
 00:06:40:04 - 00:06:59:21
 Aella Askew
 A, Hey, hey, hey, and in a second, I, I also have, as, as a, I also have a lot of childhood, like, neglect and trauma. that that's that's come out.
 
 00:06:59:23 - 00:07:01:15
 Aella Askew
 And, and that's an unfortunate.
 
 00:07:01:15 - 00:07:08:02
 Aella Askew
 Part of my story, because a lot of doctors like to hinge on that.
 
 00:07:08:04 - 00:07:11:19
 Aella Askew
 So if we fast forward now.
 
 00:07:11:19 - 00:07:22:01
 Aella Askew
 In my story. we come up to, to, you know, through through.
 
 00:07:22:01 - 00:07:22:22
 Aella Askew
 A high school and.
 
 00:07:22:22 - 00:07:38:17
 Aella Askew
 College, I, I, I had a lot of injuries and, right as I went into college, I had to fund college.
 
 00:07:38:19 - 00:07:39:14
 Aella Askew
 I was.
 
 00:07:39:14 - 00:07:50:05
 Aella Askew
 Not fortunate. And my parents didn't like me like other people. so I.
 
 00:07:51:05 - 00:07:55:16
 Aella Askew
 Ran away with the circus.
 
 00:07:55:18 - 00:07:57:13
 Aella Askew
 And, one of the.
 
 00:07:57:13 - 00:08:13:03
 Aella Askew
 Things that I liked about circus was the misfit aspect of it, because I was, I was in pain my entire life.
 
 00:08:13:05 - 00:08:19:12
 Aella Askew
 I have never not been in pain. So, ran away with the circus.
 
 00:08:19:17 - 00:08:21:23
 Aella Askew
 And, I.
 
 00:08:21:24 - 00:08:24:03
 Aella Askew
 Started with the sideshow.
 
 00:08:24:05 - 00:08:28:02
 Aella Askew
 Because. Well.
 
 00:08:28:04 - 00:08:31:01
 Aella Askew
 Didn't start there. I started with the tent crew.
 
 00:08:31:20 - 00:08:34:12
 Aella Askew
 You kind. You started the bottom work. You have.
 
 00:08:35:19 - 00:08:46:22
 Aella Askew
 And I did a little bit of everything, and, I kind of wanted to do. I want to, I wanted to do.
 
 00:08:46:22 - 00:08:49:00
 Aella Askew
 I.
 
 00:08:49:02 - 00:08:52:17
 Aella Askew
 I wanted to hang from stuff. I wanted to dance.
 
 00:08:52:18 - 00:08:59:14
 Aella Askew
 I wanted to twirl cuz I did twirling as a kid. I wanted to walk on.
 
 00:08:59:14 - 00:09:01:00
 Aella Askew
 Grass and breathe fire.
 
 00:09:01:00 - 00:09:05:01
 Aella Askew
 And do it all. And I did.
 
 00:09:05:03 - 00:09:08:16
 Aella Askew
 I had a 25 year career in circus.
 
 00:09:08:18 - 00:09:14:20
 Aella Askew
 And, I did everything I specialized.
 
 00:09:14:22 - 00:09:15:23
 Aella Askew
 In sideshow.
 
 00:09:15:23 - 00:09:17:14
 Aella Askew
 Acts. and.
 
 00:09:17:15 - 00:09:18:18
 Aella Askew
 During paint, I.
 
 00:09:18:18 - 00:09:19:23
 Aella Askew
 Did,
 
 00:09:20:00 - 00:09:21:22
 Aella Askew
 I burnt the name Princess.
 
 00:09:22:02 - 00:09:29:02
 Aella Askew
 Paint and, the, paint perf pinup.
 
 00:09:29:04 - 00:09:29:18
 Aella Askew
 I'd had.
 
 00:09:29:18 - 00:09:31:18
 Aella Askew
 Acts like,
 
 00:09:31:20 - 00:09:33:11
 Aella Askew
 The human dartboard.
 
 00:09:33:11 - 00:09:35:04
 Aella Askew
 And, my stage.
 
 00:09:35:04 - 00:09:40:22
 Aella Askew
 Name was Catalina Askew, so I would pierce whiskers through my.
 
 00:09:40:24 - 00:09:44:17
 Aella Askew
 My face, which requires you,
 
 00:09:44:19 - 00:09:47:02
 Aella Askew
 To map out all the paint.
 
 00:09:47:04 - 00:09:54:24
 Aella Askew
 In your face. and, so I would know where to pierce, blind.
 
 00:09:55:01 - 00:09:57:06
 Aella Askew
 I mean, I was always in pain.
 
 00:09:57:10 - 00:10:03:04
 Aella Askew
 So I learned to overcome even more.
 
 00:10:03:06 - 00:10:07:05
 Aella Askew
 And it's actually a problem. Me know.
 
 00:10:07:07 - 00:10:09:16
 Aella Askew
 So,
 
 00:10:09:18 - 00:10:13:08
 Aella Askew
 In 2000, 18.
 
 00:10:13:10 - 00:10:14:20
 Aella Askew
 I,
 
 00:10:14:22 - 00:10:16:21
 Aella Askew
 Decided to semi.
 
 00:10:16:21 - 00:10:26:23
 Aella Askew
 Retire. to save my body.
 
 00:10:27:00 - 00:10:30:16
 Amy (Host)
 and, like, already starting, like.
 
 00:10:32:10 - 00:10:34:08
 Aella Askew
 The knees were going.
 
 00:10:34:08 - 00:10:39:15
 Aella Askew
 And the shoulders are starting to go and.
 
 00:10:39:15 - 00:10:41:19
 Aella Askew
 I was just starting to feel.
 
 00:10:41:19 - 00:10:44:22
 Aella Askew
 All the aches and pains already.
 
 00:10:44:24 - 00:10:47:22
 Aella Askew
 And you know I was.
 
 00:10:47:24 - 00:10:55:15
 Aella Askew
 Late 20s, early 30s and
 
 00:10:55:17 - 00:10:56:13
 Aella Askew
 Yeah like early.
 
 00:10:56:13 - 00:10:57:24
 Aella Askew
 30s that stress.
 
 00:10:58:01 - 00:11:04:21
 Aella Askew
 Because
 
 00:11:04:23 - 00:11:10:10
 Aella Askew
 so,
 
 00:11:10:12 - 00:11:14:13
 Aella Askew
 I thinking,
 
 00:11:14:15 - 00:11:26:20
 Aella Askew
 Yeah. So yeah. So in a, in 2000, eight, eight, 18, I had had a shake up in my to shake up in my life and I ended up.
 
 00:11:26:20 - 00:11:28:01
 Aella Askew
 In, in, in.
 
 00:11:28:01 - 00:11:29:19
 Aella Askew
 Florida with a friend for four.
 
 00:11:29:19 - 00:11:30:20
 Aella Askew
 Months.
 
 00:11:30:22 - 00:11:34:09
 Aella Askew
 And then I ended up back together with someone.
 
 00:11:34:11 - 00:11:45:18
 Aella Askew
 Where we met and moved to Raleigh in between. And when I ended up in Raleigh, I got a job as.
 
 00:11:45:18 - 00:11:47:04
 Aella Askew
 A metal fabricator.
 
 00:11:47:04 - 00:11:52:00
 Aella Askew
 Of circus apparatus and
 
 00:11:52:02 - 00:11:59:04
 Aella Askew
 That was great for me. It was perfect lateral move. I was making apparatus for the people that I loved, and I.
 
 00:11:59:04 - 00:12:00:17
 Aella Askew
 Got to test them out.
 
 00:12:00:19 - 00:12:08:24
 Aella Askew
 And I was still, you know, like, still active, keeping myself moving and going, but not.
 
 00:12:08:24 - 00:12:09:24
 Aella Askew
 Killing myself.
 
 00:12:10:03 - 00:12:14:14
 Aella Askew
 You know, or so I thought.
 
 00:12:14:16 - 00:12:45:07
 Aella Askew
 I was using a lot of power tools daily, and I had one power tool that I held by, using, my, my left hand in front of me and my right hand up and behind my shoulder. kind, kind of like, kind of like if you, you slung like a, 12 pack over your shoulder.
 
 00:12:45:09 - 00:12:46:12
 Aella Askew
 and.
 
 00:12:46:14 - 00:12:54:01
 Aella Askew
 The way that it vibrated and how I held it, it it rested and vibrated on the base of.
 
 00:12:54:01 - 00:12:58:05
 Aella Askew
 My cervical spine for about.
 
 00:12:58:07 - 00:13:01:00
 Aella Askew
 The, you know, your your typical.
 
 00:13:01:02 - 00:13:07:03
 Aella Askew
 Eight, eight hour a day for 40 a week, you know, yeah.
 
 00:13:07:05 - 00:13:11:10
 Aella Askew
 so what essentially was happening was my.
 
 00:13:11:10 - 00:13:17:23
 Aella Askew
 Spine was being compacted at the cervical point. It no clip.
 
 00:13:18:00 - 00:13:46:17
 Aella Askew
 And I was going to the gym still about six days a week. That was my training system. This I was the standard in at any circus because I could be in the sideshow. But at any point in time, they needed somebody to jump in for an earlier, aerialist. I could do it. so I had to be in shape.
 
 00:13:47:16 - 00:13:51:23
 Aella Askew
 And, I also did a lot of character acting, too.
 
 00:13:52:00 - 00:13:59:07
 Aella Askew
 played, like, Morticia for for Fright Fest and six Flags.
 
 00:13:59:09 - 00:14:04:06
 Aella Askew
 so, you know, it's just like you had to be ready.
 
 00:14:04:08 - 00:14:06:22
 Aella Askew
 but.
 
 00:14:06:24 - 00:14:12:07
 Amy (Host)
 I, I.
 
 00:14:12:09 - 00:14:13:23
 Aella Askew
 That that.
 
 00:14:14:00 - 00:14:45:12
 Aella Askew
 That injury. Kind of amassed over time, over eight months of time. And I was new here, and I. I didn't know anyone. We found a house, on the internet. Came here at the middle of the night and, you know, set up base. So, Yeah, that that was stupid.
 
 00:14:46:11 - 00:14:51:24
 Aella Askew
 Rethinking that now because, basically, I woke up one.
 
 00:14:51:24 - 00:15:27:02
 Aella Askew
 Morning, I couldn't feel my arm. And then about a week or two passed and the guy was convinced me to go to a chiropractor. And I'm sure we can all finish that sentence. Yeah, it didn't end well. It ended with me in the hospital. It, also ended with me having to,
 
 00:15:27:04 - 00:15:28:14
 Aella Askew
 That's very least get my money back.
 
 00:15:28:14 - 00:15:44:14
 Aella Askew
 But, Yeah, lot, lot of legal words were said, and, it didn't go up. I, then found out that I had no legal recourse because.
 
 00:15:44:16 - 00:15:47:16
 Aella Askew
 The company that I was working for, I had.
 
 00:15:47:16 - 00:15:52:23
 Aella Askew
 Worked for long enough to get insurance.
 
 00:15:53:00 - 00:15:55:11
 Aella Askew
 And in the state of North Carolina.
 
 00:15:55:13 - 00:16:06:18
 Aella Askew
 He was not required to carry in a worker's comp because it was such a small company. And, then.
 
 00:16:06:21 - 00:16:11:11
 Aella Askew
 The person that I was with.
 
 00:16:11:13 - 00:16:25:18
 Aella Askew
 they were kind of pissed that I wasn't going to have their kids anymore. kicked me out of my own home. My,
 
 00:16:25:20 - 00:16:28:07
 Aella Askew
 High school best friend.
 
 00:16:29:16 - 00:16:39:08
 Aella Askew
 Girl funded me into a local apartment. From there, I did what we all do.
 
 00:16:39:10 - 00:16:55:08
 Aella Askew
 Got myself into Medicaid, got myself disability, called every charity we know and got the doctors, started the fight. I had.
 
 00:16:55:10 - 00:17:00:09
 Aella Askew
 The first experiences splitting your pills.
 
 00:17:00:09 - 00:17:02:22
 Aella Askew
 Down into 18 to.
 
 00:17:02:23 - 00:17:03:18
 Aella Askew
 Cause there's no.
 
 00:17:03:18 - 00:17:05:23
 Aella Askew
 Pain pills.
 
 00:17:06:00 - 00:17:14:18
 Aella Askew
 And that's when it started for me. The first realization that they were going to treat me like.
 
 00:17:14:18 - 00:17:16:22
 Aella Askew
 Anybody else.
 
 00:17:16:24 - 00:17:51:12
 Aella Askew
 When I when it finally dawned on me that the medication I was getting wasn't ever going to work, this, this free clinic, I was going to I didn't have anything. It got to the point where one day I was crying in the office and I was like, don't, don't you believe me? I'm I'm in pain. Like like. And he wrote that.
 
 00:17:51:14 - 00:17:55:00
 Aella Askew
 I didn't know that at the time I was.
 
 00:17:55:02 - 00:18:04:03
 Aella Askew
 I was so hysterical and in so much pain.
 
 00:18:04:05 - 00:18:06:11
 Aella Askew
 That the.
 
 00:18:06:13 - 00:18:07:23
 Aella Askew
 I couldn't believe.
 
 00:18:08:00 - 00:18:12:04
 Aella Askew
 That I overheard him laughing.
 
 00:18:12:06 - 00:18:15:02
 Aella Askew
 To the nurses.
 
 00:18:15:04 - 00:18:19:06
 Aella Askew
 That I was.
 
 00:18:19:08 - 00:18:27:22
 Aella Askew
 Crying to him. That he thought I was crazy.
 
 00:18:27:24 - 00:18:38:00
 Aella Askew
 And I couldn't. I couldn't believe the surrealism of the moment because it never.
 
 00:18:38:00 - 00:18:40:07
 Aella Askew
 Happened to me.
 
 00:18:40:09 - 00:18:53:23
 Aella Askew
 It was so gross. And at that moment it all dawned on. And that's the day.
 
 00:18:54:00 - 00:18:56:09
 Aella Askew
 I started.
 
 00:18:56:11 - 00:19:07:05
 Aella Askew
 Advocating. I found advocates, I started digging, I started looking up. I became my own mama bear. That's when I found out that I should ask for my own records.
 
 00:19:07:07 - 00:19:12:00
 Aella Askew
 So I asked for them.
 
 00:19:12:02 - 00:19:18:01
 Aella Askew
 I can't believe they still exist as they do.
 
 00:19:18:03 - 00:19:19:07
 Aella Askew
 I have things on there.
 
 00:19:19:07 - 00:19:28:09
 Aella Askew
 That say my problem is that I'm a woman. That,
 
 00:19:28:11 - 00:19:33:09
 Aella Askew
 I can't possibly have Aids because I don't walk like his other patient.
 
 00:19:33:15 - 00:19:35:22
 Aella Askew
 Leads.
 
 00:19:35:24 - 00:19:37:12
 Aella Askew
 He sent me to a neurologist.
 
 00:19:37:12 - 00:19:38:04
 Aella Askew
 But.
 
 00:19:38:06 - 00:19:42:22
 Aella Askew
 Only for gay. He would only give me.
 
 00:19:42:22 - 00:20:25:15
 Aella Askew
 Segments for pain. So I got gabapentin. And then workup. And then more. And then more. And then more. And I was up to like 60 400mg of gabapentin. I couldn't see front of my face, let alone remember my name. And I was in so much pain. And that's when I was to the point of crying. You think I'm crazy?
 
 00:20:25:17 - 00:20:30:22
 Aella Askew
 And at that point I weaned myself.
 
 00:20:30:24 - 00:20:37:10
 Aella Askew
 Off of gabapentin. But I did it right. Because I didn't know better.
 
 00:20:37:12 - 00:20:48:23
 Aella Askew
 I had no idea that you couldn't divide capsules up by yourself. So I went through the world's worst withdrawal.
 
 00:20:48:23 - 00:20:49:11
 Aella Askew
 And I had.
 
 00:20:49:11 - 00:20:51:21
 Aella Askew
 No idea that's what was happening.
 
 00:20:51:21 - 00:20:54:15
 Aella Askew
 To me.
 
 00:20:54:17 - 00:21:12:07
 Aella Askew
 But I'm glad it happened because I found the idea of community. And then I found out that there's some shitty people need us it.
 
 00:21:12:09 - 00:21:14:18
 Aella Askew
 But.
 
 00:21:14:20 - 00:21:20:14
 Aella Askew
 I met a whole bunch of them in person, and I went to some meetings.
 
 00:21:20:16 - 00:21:22:06
 Aella Askew
 And.
 
 00:21:22:08 - 00:21:23:22
 Aella Askew
 I met some amazing.
 
 00:21:24:00 - 00:21:25:01
 Aella Askew
 People that were.
 
 00:21:25:01 - 00:21:31:14
 Aella Askew
 Really cool and who introduced me to AEDs and all its comorbidities.
 
 00:21:31:16 - 00:21:32:09
 Aella Askew
 And that's how.
 
 00:21:32:09 - 00:21:39:18
 Aella Askew
 I learned about ring splints. Yeah, it's, you know, like, first I created my own and then, you know, I.
 
 00:21:39:18 - 00:21:41:00
 Aella Askew
 Learned I.
 
 00:21:41:00 - 00:21:55:21
 Aella Askew
 Got I got myself to, hand therapists to measured me. And then I got my own, I found an amazing person who make some pretty cheap out of Latvia.
 
 00:21:55:23 - 00:21:58:06
 Aella Askew
 And, you know.
 
 00:21:58:06 - 00:22:00:01
 Aella Askew
 You become resourceful.
 
 00:22:00:03 - 00:22:08:17
 Aella Askew
 After. After a while. I mean, how I got my neck brace.
 
 00:22:08:19 - 00:22:10:02
 Aella Askew
 Coming. Resourceful.
 
 00:22:10:03 - 00:22:14:19
 Aella Askew
 I saw another AEDs.
 
 00:22:14:21 - 00:22:19:05
 Aella Askew
 person that I know that, had this exact.
 
 00:22:19:05 - 00:22:20:07
 Aella Askew
 Neck brace because.
 
 00:22:20:07 - 00:22:22:05
 Aella Askew
 The one that they gave me.
 
 00:22:22:07 - 00:22:22:14
 Aella Askew
 Kept.
 
 00:22:22:14 - 00:22:23:17
 Aella Askew
 Collapsing on me.
 
 00:22:23:17 - 00:22:36:11
 Aella Askew
 With my hex. I get to that. But, Yeah, part of part of.
 
 00:22:36:13 - 00:22:41:17
 Aella Askew
 Part of my journey there. So, so.
 
 00:22:44:03 - 00:22:50:23
 Aella Askew
 So in the in the in the whole process of being invalidated.
 
 00:22:51:00 - 00:22:55:18
 Aella Askew
 And, and finding out about myself,
 
 00:22:55:20 - 00:23:02:17
 Aella Askew
 I, I didn't, I didn't get the diagnosis first.
 
 00:23:02:19 - 00:23:09:12
 Aella Askew
 I got sick first. so,
 
 00:23:09:14 - 00:23:10:08
 Aella Askew
 I got.
 
 00:23:11:18 - 00:23:16:00
 Aella Askew
 I got sent to CBT.
 
 00:23:16:02 - 00:23:21:24
 Aella Askew
 Typical first line.
 
 00:23:22:01 - 00:23:37:04
 Aella Askew
 Didn't get the Xfinity diagnosis yet. Right now they're just saying everything is anxiety. Everything is trauma. You had an.
 
 00:23:37:04 - 00:23:40:22
 Aella Askew
 Accident, you're traumatized.
 
 00:23:40:24 - 00:24:00:07
 Aella Askew
 And at this point, I'm starting CBT. And that's when they realize because they've cracked the case. And what I say is they've broken Pandora's box.
 
 00:24:00:09 - 00:24:17:14
 Aella Askew
 They ripped, I buried trauma from my head, and now I have flashbacks, nightmares, and PTSD. Thanks.
 
 00:24:17:16 - 00:24:20:08
 Aella Askew
 I didn't have that before.
 
 00:24:20:10 - 00:24:25:06
 Aella Askew
 There's a reason children bury those memories.
 
 00:24:25:08 - 00:24:25:18
 Aella Askew
 I don't want.
 
 00:24:25:18 - 00:24:33:00
 Aella Askew
 To relive them. I didn't want to know I was abused.
 
 00:24:33:02 - 00:24:37:09
 Aella Askew
 Took. I.
 
 00:24:37:11 - 00:24:43:20
 Aella Askew
 Yeah. And,
 
 00:24:43:22 - 00:24:48:13
 Aella Askew
 I would say sure. Shortly after that,
 
 00:24:48:15 - 00:24:56:16
 Aella Askew
 The seizures came and, tics came.
 
 00:24:56:18 - 00:25:41:07
 Aella Askew
 But you have to think of all the other factors. Now, this is where it gets weird. I've had a spine injury. I've now been sent through crazy therapy. It's 2019. We've had a pandemic. I am now living in an apartment complex. And my lease is up. And the. New ownership has doubled. My rent.
 
 00:25:41:09 - 00:25:48:20
 Aella Askew
 Get me out. I am now homeless again. I am now living.
 
 00:25:48:20 - 00:25:56:11
 Aella Askew
 In a new room and.
 
 00:25:56:13 - 00:26:36:11
 Aella Askew
 A few years is riddled with black mold, to the point that I eventually have to move out. Because my wheelchair will fall through the floor. So. I've been diagnosed with pans. Pans. Pandas. It is a infection that gets to your brain and causes. I have a number of things like OCD, rage, attacks, tics. I could have gotten it during the pandemic.
 
 00:26:36:13 - 00:26:46:21
 Aella Askew
 You could have gotten it living in that house. I could have gotten it when I was born with mono. I. I could have gotten it in college when I had an attack.
 
 00:26:46:21 - 00:26:49:10
 Aella Askew
 Of Bell's palsy.
 
 00:26:49:12 - 00:27:03:08
 Aella Askew
 I would have gotten it when I had a mini stroke in college. I could have gotten it at any point in my life. And now it came out. I have no idea.
 
 00:27:03:10 - 00:27:05:19
 Aella Askew
 This this.
 
 00:27:05:21 - 00:27:11:06
 Aella Askew
 But I'm being medicated for it now, which is why I'm able to.
 
 00:27:11:06 - 00:27:29:19
 Aella Askew
 Mask and and it's a lot milder right now. and, this it's it's, that's that's my, but but it's still there. And, that adds another.
 
 00:27:29:19 - 00:27:32:19
 Aella Askew
 Another layer to my lack of.
 
 00:27:32:19 - 00:27:34:13
 Aella Askew
 Credibility.
 
 00:27:34:15 - 00:28:02:10
 Aella Askew
 So when I go to see neurologists, what do they read? Trauma patterns, non epileptic seizures. And they don't look at any of my physical injuries. None of them, none of my physical symptoms ever get mentioned or looked at. I have closeness.
 
 00:28:02:12 - 00:28:06:12
 Aella Askew
 I have limit sign. I have.
 
 00:28:06:14 - 00:28:15:03
 Aella Askew
 So much instability to the point where if I literally turn my head in certain ways, the cracks are so loud people can hear.
 
 00:28:15:03 - 00:28:18:15
 Aella Askew
 That it's gross.
 
 00:28:18:17 - 00:28:26:21
 Aella Askew
 I have another sign I can't remember. It's like, hey, hey, a sign that I have, fractures on the outside.
 
 00:28:26:24 - 00:28:29:08
 Aella Askew
 Of my arms.
 
 00:28:29:10 - 00:28:33:00
 Aella Askew
 They're basically signs that say.
 
 00:28:33:02 - 00:28:34:06
 Aella Askew
 more fractures.
 
 00:28:34:08 - 00:28:58:09
 Aella Askew
 My arms have dislocated so much that they've fractured on the outside, and the the only way they can do that, only way they can fix it, is when the fracture gets so bad that they can fill it back in with bone. So I just have to live with fractures. And because I have Medicaid.
 
 00:28:58:11 - 00:29:05:03
 Aella Askew
 Minor fracture pills are not covered. So I'm literally.
 
 00:29:05:05 - 00:29:12:08
 Aella Askew
 Homeless. Malnourished because they give me $66 a month.
 
 00:29:12:08 - 00:29:13:23
 Aella Askew
 For food.
 
 00:29:14:00 - 00:29:26:13
 Aella Askew
 Not cared for in any way, shape or form. And really, just like, how can it out here?
 
 00:29:26:15 - 00:29:33:16
 Aella Askew
 and. Oh yeah, and I forgot I wanted to I told you about this. So my, my week.
 
 00:29:33:18 - 00:29:37:10
 Aella Askew
 These are just hilarious. in the.
 
 00:29:37:10 - 00:29:40:14
 Aella Askew
 Last week, I saw, two.
 
 00:29:40:14 - 00:29:44:02
 Aella Askew
 Neurologists,
 
 00:29:44:04 - 00:29:51:18
 Aella Askew
 The first neurologist I went to with a new nurse aid.
 
 00:29:51:20 - 00:29:57:07
 Aella Askew
 this she she.
 
 00:29:57:09 - 00:30:06:22
 Aella Askew
 She was is disabled, and I was. She walked in the door and asked to have a seat.
 
 00:30:06:24 - 00:30:11:08
 Aella Askew
 I was like, what?
 
 00:30:11:10 - 00:30:32:08
 Aella Askew
 And then, like. I'm autistic. I can I can mask, but but if it's the first thing in the morning, I'm not masking very well.
 
 00:30:32:10 - 00:30:33:11
 Aella Askew
 so this.
 
 00:30:33:13 - 00:30:38:00
 Aella Askew
 She she was unable to find my shoes.
 
 00:30:38:02 - 00:30:38:10
 Aella Askew
 Right.
 
 00:30:38:10 - 00:30:38:22
 Aella Askew
 Behind.
 
 00:30:38:22 - 00:30:43:05
 Aella Askew
 Her.
 
 00:30:43:07 - 00:31:18:16
 Aella Askew
 She was unable to bend down. I, I literally showed her three rooms, my room, which is a blanket fort. It's it's like, literally removing blankets to cover up the front room. The room with the bathroom, which is somebody else's room and a kitchen. I asked her to go in my room and grab a cup for me. While we were in the kitchen, she forgot which one was my room.
 
 00:31:18:18 - 00:31:37:17
 Aella Askew
 Then she did things like, just be like, hurry up, we're going to be late. We're going to be late. And then like, infantilized me the entire time and be like, you know, I really slow down. Come on, here we go. And I'm just like.
 
 00:31:37:19 - 00:31:39:05
 Aella Askew
 What if.
 
 00:31:39:07 - 00:31:45:12
 Aella Askew
 Who's 40 here?
 
 00:31:45:14 - 00:31:58:03
 Aella Askew
 But so by the time we got to the doctor's appointment, I had her literally wait in the waiting room because I thought my credibility would be even more shot. But I went into the appointment.
 
 00:31:58:05 - 00:31:58:12
 Aella Askew
 new.
 
 00:31:58:13 - 00:32:08:07
 Aella Askew
 Neurologist. I had him referred. I was referred to him by another neurologist. That doesn't.
 
 00:32:08:09 - 00:32:11:20
 Aella Askew
 Know. Not favorable.
 
 00:32:11:22 - 00:32:18:19
 Aella Askew
 And he literally walked in fatness chair.
 
 00:32:18:21 - 00:32:24:10
 Aella Askew
 And went like this.
 
 00:32:24:12 - 00:32:26:21
 Aella Askew
 And then just sat there.
 
 00:32:26:23 - 00:32:32:12
 Aella Askew
 Until I talked.
 
 00:32:32:14 - 00:32:35:03
 Amy (Host)
 So he didn't ask any question.
 
 00:32:35:05 - 00:32:51:21
 Aella Askew
 Hello. You know, and it was so awkward. So it just started talking and he just sat there like this. The I.
 
 00:32:51:23 - 00:32:54:10
 Aella Askew
 It was so rude.
 
 00:32:54:12 - 00:33:10:14
 Aella Askew
 And then he told me after asking a few questions that were really random, that I was a disorganized historian. I was I told him that I was really upset.
 
 00:33:10:14 - 00:33:12:02
 Aella Askew
 About this nurse.
 
 00:33:12:04 - 00:33:22:09
 Aella Askew
 I even asked if I could stay in the exam room afterwards so that I could call the agency and have her sent back separately.
 
 00:33:22:11 - 00:33:26:23
 Aella Askew
 and
 
 00:33:27:00 - 00:33:48:16
 Aella Askew
 This man had the gall to look at me and just be like, I don't understand why you're here. What do you want me to do? You have any? I was like, I had actually, brought your.
 
 00:33:48:18 - 00:33:51:11
 Aella Askew
 little thing about.
 
 00:33:51:13 - 00:33:55:08
 Aella Askew
 You know, some imaging and had been.
 
 00:33:55:08 - 00:33:56:15
 Aella Askew
 Like.
 
 00:33:56:17 - 00:34:18:04
 Aella Askew
 what about some functional imaging, maybe some flexion? You know, like, I have this sign. This sign, this sign, this sign. Did you look into my eyes? No, I have I have no feeling in my lumbar.
 
 00:34:18:05 - 00:34:24:15
 Aella Askew
 Like, there's there's plenty of evidence here to work with.
 
 00:34:24:17 - 00:34:27:06
 Aella Askew
 Like.
 
 00:34:27:08 - 00:34:50:18
 Aella Askew
 I have lymphedema. Like, come on, work with me here. I haven't even had a spinal tap. Come on. It's just like nothing. They're just like, well, you've had an MRI. I'm like, yes. Three years ago.
 
 00:34:50:20 - 00:34:58:06
 Aella Askew
 And I've been doing what? And seeing doctors to tell me. I have definitely.
 
 00:34:58:08 - 00:35:00:13
 Aella Askew
 Sick.
 
 00:35:00:15 - 00:35:15:18
 Aella Askew
 And then I find out that I, My Pat's diagnosis wasn't even recorded.
 
 00:35:15:20 - 00:35:33:14
 Aella Askew
 Yes. So my credibility shot there to. Meanwhile, my both my pet is one that's worked with me for six years has caught me like so many times.
 
 00:35:33:16 - 00:35:34:11
 Aella Askew
 I'm just like.
 
 00:35:34:11 - 00:35:36:21
 Aella Askew
 I.
 
 00:35:36:23 - 00:35:38:21
 Aella Askew
 Just read my pet notes, like.
 
 00:35:39:02 - 00:35:39:23
 Aella Askew
 Come on.
 
 00:35:40:00 - 00:36:00:01
 Aella Askew
 Just work with me for six years and like physically with me for hours at a time. it's so frustrating. I mean, then the second, I mean, that was a disaster. He wanted me to schedule a redo.
 
 00:36:00:03 - 00:36:02:02
 Aella Askew
 And cancel that.
 
 00:36:02:03 - 00:36:13:04
 Aella Askew
 I also called the. Very next morning, I woke up at like 7 a.m. to cut the communication between my primary and him. A primary is my new.
 
 00:36:13:04 - 00:36:16:00
 Aella Askew
 Primary is amazing.
 
 00:36:16:02 - 00:36:25:01
 Aella Askew
 Thank God I've seen him four times now and he's been awesome. He he's the one that gave me the benefit of the doubt on the pans diagnosis.
 
 00:36:25:01 - 00:36:29:08
 Aella Askew
 And, thank God.
 
 00:36:29:10 - 00:36:32:15
 Aella Askew
 The second neurologist I just saw like two.
 
 00:36:32:15 - 00:36:38:09
 Aella Askew
 Days ago and,
 
 00:36:38:11 - 00:36:41:11
 Aella Askew
 I am so glad I am a better human than her.
 
 00:36:44:15 - 00:36:51:04
 Aella Askew
 She was so ridiculous that I. I couldn't be mad.
 
 00:36:51:06 - 00:36:53:17
 Aella Askew
 Afterwards.
 
 00:36:53:19 - 00:37:09:05
 Aella Askew
 Because it was that absurd. Yeah. I went with my, care management, who is a licensed therapist.
 
 00:37:09:07 - 00:37:12:07
 Aella Askew
 yes.
 
 00:37:12:09 - 00:37:20:09
 Aella Askew
 And he ran in there with me. And it started off as a migraine.
 
 00:37:20:09 - 00:37:21:24
 Aella Askew
 Neurologist who.
 
 00:37:21:24 - 00:37:23:12
 Aella Askew
 I was trying to go in.
 
 00:37:23:14 - 00:37:25:21
 Aella Askew
 From a different angle.
 
 00:37:25:23 - 00:37:26:12
 Aella Askew
 Figure.
 
 00:37:26:14 - 00:37:28:08
 Aella Askew
 Show the loud cracks.
 
 00:37:28:08 - 00:37:29:19
 Aella Askew
 Explain my.
 
 00:37:30:00 - 00:37:35:02
 Aella Askew
 Headache. You know, perma headache.
 
 00:37:35:04 - 00:37:55:23
 Aella Askew
 Maybe I can get them to do some different imaging. Maybe I can get her to acknowledge maybe some trigeminal neuralgia, leave something I explain trigeminal neuralgia, CCI, occipital neuralgia.
 
 00:37:56:00 - 00:37:56:21
 Aella Askew
 you know.
 
 00:37:56:23 - 00:38:17:23
 Aella Askew
 The pain from tethered cord to a T. I've had a migraine diagnosis and show is a. I did not describe migraine pain. Not once did I say, my, my.
 
 00:38:18:00 - 00:38:26:10
 Aella Askew
 My one specifically did it on purpose.
 
 00:38:26:12 - 00:38:27:12
 Aella Askew
 Like.
 
 00:38:27:14 - 00:38:33:02
 Aella Askew
 Chronic illness patients were crafty.
 
 00:38:33:04 - 00:38:46:23
 Aella Askew
 And, she just kept rerouting it, and she kept making me, as an autistic person, do something that's really difficult for me to do, which is describe.
 
 00:38:47:00 - 00:38:51:10
 Aella Askew
 How things feel. I have a.
 
 00:38:51:10 - 00:38:57:24
 Aella Askew
 Really difficult time describing emotions and describing how things feel in.
 
 00:38:57:24 - 00:39:02:12
 Aella Askew
 My body. It's very difficult.
 
 00:39:02:14 - 00:39:08:20
 Aella Askew
 If I can just name the symptom, let me name the fucking symptom.
 
 00:39:08:22 - 00:39:13:13
 Aella Askew
 Just let me do it. And it took so much longer.
 
 00:39:17:02 - 00:39:26:09
 Aella Askew
 And then shooting I trauma so. Oh well she acknowledged it in that her diagnosis.
 
 00:39:26:09 - 00:39:28:12
 Aella Askew
 But,
 
 00:39:28:14 - 00:39:36:22
 Aella Askew
 Not in the fact that you probably shouldn't stand over somebody and aggressively.
 
 00:39:36:24 - 00:39:45:20
 Aella Askew
 Peek at them. I, I asked her, well.
 
 00:39:45:22 - 00:39:52:18
 Aella Askew
 What do you feel like I should do diagnostically? What what kind of test.
 
 00:39:52:20 - 00:39:53:09
 Aella Askew
 Do you.
 
 00:39:53:11 - 00:40:09:06
 Aella Askew
 Recommend? I do a course you would recommend for a patient such as me trying to and treat her curiosities. And this is what she literally said to me.
 
 00:40:09:08 - 00:40:11:04
 Aella Askew
 Well, let me talk about this.
 
 00:40:11:04 - 00:40:20:23
 Aella Askew
 But, she said, well, your diagnosis is f n g.
 
 00:40:22:00 - 00:40:30:09
 Aella Askew
 Not my job to convince you of your diagnosis. If you don't believe it, I'm going to.
 
 00:40:30:09 - 00:40:34:00
 Aella Askew
 Continue believing it.
 
 00:40:34:02 - 00:40:36:20
 Aella Askew
 Or what? She said no, I'm going to continue believing.
 
 00:40:36:20 - 00:40:45:22
 Aella Askew
 It, whether you believe it or not. That's what this.
 
 00:40:45:24 - 00:40:48:11
 Aella Askew
 What?
 
 00:40:48:13 - 00:40:56:11
 Aella Askew
 I told her this is after I told her that it was a lazy diagnosis, and she has no evidence.
 
 00:40:56:13 - 00:40:58:07
 Aella Askew
 Like.
 
 00:40:58:09 - 00:41:16:12
 Aella Askew
 There's literally. It's a diagnosis of exclusion. you need each page. It says it's conversion disorder. It states that it's from Freud, who has been debunked.
 
 00:41:16:14 - 00:41:19:00
 Aella Askew
 It's.
 
 00:41:19:02 - 00:41:30:06
 Aella Askew
 It's a relic of the past. It is actually. It is highly diagnosed. Two women. Whom do I sense a bit.
 
 00:41:30:06 - 00:41:42:10
 Aella Askew
 Of hysteria here. You know, like come on people. And it's not just functional neurological order.
 
 00:41:42:12 - 00:41:43:12
 Aella Askew
 I also have.
 
 00:41:43:12 - 00:41:44:19
 Aella Askew
 A functional.
 
 00:41:44:19 - 00:41:45:18
 Aella Askew
 Abdominal.
 
 00:41:45:18 - 00:41:47:03
 Aella Askew
 Disorder.
 
 00:41:47:05 - 00:41:59:07
 Aella Askew
 What is that? Hmhm. My abdomen is functional, but somehow I just. What, cyclically vomit for no reason.
 
 00:41:59:09 - 00:42:04:08
 Aella Askew
 Explain that to me, Hmhm.
 
 00:42:04:10 - 00:42:11:07
 Aella Askew
 There's no explanation to it. And then what? What is, I h.
 
 00:42:11:07 - 00:42:12:16
 Aella Askew
 Or,
 
 00:42:12:18 - 00:42:15:10
 Aella Askew
 Pseudo tuber. Sorry. Tumors or.
 
 00:42:15:10 - 00:42:19:15
 Aella Askew
 Debris? now.
 
 00:42:19:17 - 00:42:42:14
 Aella Askew
 Idiopathic intracranial hypertension. This is same thing. Is pseudo tuber. Sure. Maybe it but it's the same thing. It's a I don't know. If you that's what idiopathic. Yeah. Idiopathic I don't know pseudo term where.
 
 00:42:42:16 - 00:42:43:09
 Aella Askew
 I think.
 
 00:42:43:09 - 00:42:45:04
 Aella Askew
 The tumor.
 
 00:42:45:06 - 00:42:47:10
 Amy (Host)
 Sort of seizure.
 
 00:42:47:12 - 00:42:51:13
 Aella Askew
 Exactly.
 
 00:42:51:15 - 00:43:02:20
 Aella Askew
 Non epileptic. Let's name the thing by what. It's not and then send the person to an epilepsy specialist.
 
 00:43:06:00 - 00:43:11:14
 Aella Askew
 Doesn't doesn't math math math. And.
 
 00:43:11:16 - 00:43:12:17
 Aella Askew
 Yeah. No.
 
 00:43:12:19 - 00:43:14:18
 Aella Askew
 And that's what I keep coming up.
 
 00:43:14:18 - 00:43:15:15
 Aella Askew
 To.
 
 00:43:15:17 - 00:43:19:14
 Aella Askew
 Is I keep getting sent to people.
 
 00:43:19:16 - 00:43:22:18
 Aella Askew
 That tell.
 
 00:43:22:20 - 00:43:35:16
 Aella Askew
 Me that they know. Some don't know. They can't possibly know at all. I know this woman for all of 15 minutes, and she knows my body better than me.
 
 00:43:35:18 - 00:43:39:04
 Aella Askew
 I don't.
 
 00:43:39:06 - 00:43:43:14
 Aella Askew
 I don't think so. And then, like.
 
 00:43:43:16 - 00:43:49:19
 Aella Askew
 You you want to tell me that my whole body that ends up in the.
 
 00:43:49:19 - 00:43:54:13
 Aella Askew
 Hospital over and over and over again.
 
 00:43:54:15 - 00:43:55:03
 Aella Askew
 Is.
 
 00:43:55:05 - 00:44:00:12
 Aella Askew
 Functioning.
 
 00:44:00:14 - 00:44:14:11
 Aella Askew
 I'm sorry, but, you don't be a high functioning individual. I mean, like, high functioning. I hung from a frickin trapeze.
 
 00:44:14:13 - 00:44:15:11
 Aella Askew
 Like.
 
 00:44:15:13 - 00:44:36:00
 Aella Askew
 Like I had six packs up until 2018, you know, go from hanging fat trapeze and driving tent stakes to wheelchair. With a functional body.
 
 00:44:36:02 - 00:44:39:16
 Amy (Host)
 And then they just say, oh, yeah, I just broken mind.
 
 00:44:39:18 - 00:44:43:12
 Aella Askew
 You know?
 
 00:44:43:14 - 00:44:51:22
 Aella Askew
 Now, would you know what they say with me? It's anxiety. It's trauma.
 
 00:44:51:24 - 00:44:52:10
 Amy (Host)
 everything.
 
 00:44:52:10 - 00:45:02:08
 Aella Askew
 And you blame everything on trauma. Everything on anxiety.
 
 00:45:02:10 - 00:45:24:06
 Aella Askew
 I end up in the hospital for malnutrition and dehydration. They blame it on PTSD. Yes, I had a PTSD episode because, well, it's the South, and, anyone would freak out when they're shooting guns in the street in front of your house.
 
 00:45:24:08 - 00:45:27:02
 Aella Askew
 Yeah.
 
 00:45:27:04 - 00:45:33:16
 Aella Askew
 Especially when you're sick. Like vomiting for three weeks straight.
 
 00:45:33:18 - 00:45:35:20
 Aella Askew
 You're nervous. You're going to be a little wrecked.
 
 00:45:35:22 - 00:45:36:23
 Aella Askew
 Yeah.
 
 00:45:37:00 - 00:45:59:05
 Amy (Host)
 I think they didn't know. I'm actually going to share the fact, brain stem function. One of the thing is, like, you know, it controls the reflex. It, the vomiting things, you know, is water. I actually experienced them myself right before surgery, so I was I definitely fractured.
 
 00:45:59:07 - 00:46:08:15
 Aella Askew
 Exactly. Like, that's that's the other thing. Like, I.
 
 00:46:08:17 - 00:46:09:16
 Aella Askew
 I have so much.
 
 00:46:09:16 - 00:46:13:18
 Aella Askew
 Nausea and, like, dizziness, like.
 
 00:46:13:20 - 00:46:20:02
 Aella Askew
 It's like like something you were saying with, like, the, you're standing frame.
 
 00:46:20:04 - 00:46:22:00
 Aella Askew
 Like how you you can't.
 
 00:46:22:02 - 00:46:34:13
 Aella Askew
 Can't really use a standing frame. I don't think I could either. Like, I am too dizzy most days, you know, it's just like.
 
 00:46:34:15 - 00:46:35:15
 Amy (Host)
 I, I.
 
 00:46:35:17 - 00:46:37:24
 Aella Askew
 I feel like.
 
 00:46:38:01 - 00:46:44:01
 Aella Askew
 I'm just, like, even even with my neck. Like, I could not keep it.
 
 00:46:44:01 - 00:46:46:08
 Aella Askew
 Upright most days.
 
 00:46:46:10 - 00:46:51:16
 Aella Askew
 Like, my my wheelchair is actually jerry rigged with this lovely piece from China.
 
 00:46:52:18 - 00:46:54:02
 Aella Askew
 Just just so that I have.
 
 00:46:54:02 - 00:46:55:13
 Aella Askew
 A head rest because.
 
 00:46:55:13 - 00:46:57:09
 Aella Askew
 My med medicaid chair did.
 
 00:46:57:09 - 00:47:01:12
 Aella Askew
 Not come with a headrest. because I'm like, I.
 
 00:47:01:12 - 00:47:02:10
 Aella Askew
 Couldn't do without.
 
 00:47:02:10 - 00:47:05:06
 Aella Askew
 It.
 
 00:47:05:08 - 00:47:13:15
 Amy (Host)
 And, even after surgery, I'm still having a hard time getting everybody upright.
 
 00:47:13:17 - 00:47:15:06
 Aella Askew
 Yeah, yeah, it's.
 
 00:47:15:06 - 00:47:17:15
 Aella Askew
 Like you have, like, a meter.
 
 00:47:17:17 - 00:47:28:13
 Aella Askew
 Where you're just like, nope, I got to be leaning and something like, there was in something behind my I could not like I couldn't sit on the mattress.
 
 00:47:28:15 - 00:47:32:23
 Aella Askew
 That would, that would be like being in free space. I'd be the space man.
 
 00:47:33:00 - 00:47:37:03
 Aella Askew
 Just be like,
 
 00:47:37:05 - 00:47:40:08
 Aella Askew
 No way. I could not do that.
 
 00:47:40:10 - 00:47:53:00
 Aella Askew
 Like my me and my PT, I'm just like. Like she always wants me to, like, go off. It's in the middle of the room. I'm like, no, there's nothing to grab there.
 
 00:47:53:02 - 00:47:57:15
 Aella Askew
 She's like, you can do it. Come on. Oh.
 
 00:47:57:17 - 00:48:01:05
 Amy (Host)
 Was the party also functional?
 
 00:48:01:07 - 00:48:12:18
 Aella Askew
 Mainly doing other stuff that they want. They want me to be functional like, no.
 
 00:48:12:20 - 00:48:16:11
 Aella Askew
 So I have a, aquatic party and.
 
 00:48:16:13 - 00:48:18:12
 Aella Askew
 My,
 
 00:48:18:14 - 00:48:25:05
 Aella Askew
 It's interesting. my. I have an aquatic party that I've had for six.
 
 00:48:25:05 - 00:48:26:13
 Aella Askew
 Years, but.
 
 00:48:26:15 - 00:48:36:05
 Aella Askew
 at one point in time, she bowed out, for a little bit, and I got a different aquatic party who happens to be younger, but.
 
 00:48:36:05 - 00:48:42:00
 Aella Askew
 Her boss and,
 
 00:48:42:02 - 00:48:43:19
 Aella Askew
 So jolene's amazing.
 
 00:48:45:01 - 00:49:10:08
 Aella Askew
 And, she actually has a chronic illness and now can't be in the water for some time. and so now she's become my land party, and, so she tends to, to coax me to do the more radical acts because she is younger and tries to get a little more creative.
 
 00:49:10:10 - 00:49:11:20
 Aella Askew
 And,
 
 00:49:11:22 - 00:49:21:21
 Aella Askew
 So she'll try to, like, rig up obstacle courses or, or things, and I'm just like, you're not.
 
 00:49:21:23 - 00:49:23:05
 Aella Askew
 Yeah.
 
 00:49:23:07 - 00:49:40:08
 Aella Askew
 Like I'll get like, maybe, maybe, like, I don't know, an inch or two through her practice. Like, you're crazy, lady. She usually has the dumbing down every single time. I'm like, you're.
 
 00:49:40:08 - 00:49:42:24
 Aella Askew
 Really, really, like.
 
 00:49:43:01 - 00:49:47:20
 Aella Askew
 Aspirational. I commend you.
 
 00:49:47:22 - 00:49:50:00
 Aella Askew
 Only like you.
 
 00:49:50:00 - 00:49:53:00
 Aella Askew
 Do it every single time. Like I'm. I'm telling her.
 
 00:49:53:00 - 00:49:53:09
 Aella Askew
 I'm like.
 
 00:49:53:13 - 00:49:57:09
 Aella Askew
 My arms don't go up that high.
 
 00:49:57:11 - 00:50:04:12
 Aella Askew
 Yeah. No, they used to.
 
 00:50:04:14 - 00:50:10:05
 Aella Askew
 Know you tried dislocating them enough time. Like I.
 
 00:50:10:05 - 00:50:12:03
 Aella Askew
 Can make them go up that high, but you don't.
 
 00:50:12:03 - 00:50:17:03
 Aella Askew
 Want me to. And I don't want me to. Exactly.
 
 00:50:17:05 - 00:50:18:11
 Aella Askew
 That's the face I would.
 
 00:50:18:11 - 00:50:21:24
 Aella Askew
 Make if I made them go up that high.
 
 00:50:22:01 - 00:50:25:02
 Aella Askew
 That's usually, surprised face.
 
 00:50:25:02 - 00:50:32:20
 Aella Askew
 To because I made them go that way. Yeah, that's usually what happens when I look.
 
 00:50:32:22 - 00:50:35:11
 Aella Askew
 Like when I do my hair. I lay down, like.
 
 00:50:35:13 - 00:50:41:20
 Aella Askew
 In this, like, sort of angled way. Yeah. And I try to, like.
 
 00:50:41:22 - 00:50:45:15
 Aella Askew
 Position myself so that I can get the best.
 
 00:50:45:17 - 00:50:46:18
 Aella Askew
 Like.
 
 00:50:46:20 - 00:50:48:13
 Aella Askew
 Position.
 
 00:50:48:15 - 00:50:54:15
 Aella Askew
 But if I slip and then my arms go too far, that's when you get.
 
 00:50:54:15 - 00:50:57:06
 Aella Askew
 The surprised face.
 
 00:50:57:08 - 00:50:58:10
 Aella Askew
 You know.
 
 00:50:58:12 - 00:51:05:03
 Amy (Host)
 Yeah, I, I had the weird way to do my hair to it.
 
 00:51:05:05 - 00:51:06:01
 Aella Askew
 Yeah.
 
 00:51:06:03 - 00:51:11:10
 Amy (Host)
 It's all working. Like my shoulder doesn't work. That was like sugar shoulder.
 
 00:51:11:12 - 00:51:13:04
 Aella Askew
 You know.
 
 00:51:13:06 - 00:51:13:17
 Aella Askew
 I've been.
 
 00:51:13:17 - 00:51:20:21
 Aella Askew
 Contemplating it, but I'm like, I finally got it to grow long.
 
 00:51:20:23 - 00:51:21:20
 Aella Askew
 From taking me.
 
 00:51:21:20 - 00:51:24:14
 Aella Askew
 Forever.
 
 00:51:24:16 - 00:51:28:19
 Aella Askew
 Like, I think it's just cause, like, I was.
 
 00:51:28:19 - 00:51:31:05
 Aella Askew
 On,
 
 00:51:31:07 - 00:51:43:05
 Aella Askew
 My mast cells are not like. That was the one thing I got diagnosed extremely easily.
 
 00:51:43:07 - 00:51:46:00
 Aella Askew
 I, I,
 
 00:51:46:02 - 00:51:54:05
 Aella Askew
 I got I got to see this one. Doctor, doctor, I walla and factually an interesting.
 
 00:51:54:07 - 00:51:57:00
 Aella Askew
 And, interesting.
 
 00:51:57:02 - 00:52:07:18
 Aella Askew
 dynamic there because, I happen to know other patients that get to see her more frequently because they have, you know, mama bears.
 
 00:52:07:22 - 00:52:10:12
 Aella Askew
 And better insurance.
 
 00:52:10:14 - 00:52:12:07
 Aella Askew
 So I get to see her about once a year.
 
 00:52:12:07 - 00:52:14:14
 Aella Askew
 But she's very good. Doctor.
 
 00:52:14:16 - 00:52:20:08
 Aella Askew
 And, so when you, when you go to get your mast cell tested.
 
 00:52:20:10 - 00:52:20:14
 Aella Askew
 you.
 
 00:52:20:14 - 00:52:21:19
 Aella Askew
 Got to do the whole.
 
 00:52:21:21 - 00:52:25:15
 Aella Askew
 Testing and, she.
 
 00:52:25:16 - 00:52:26:18
 Aella Askew
 She tells me.
 
 00:52:26:18 - 00:52:28:02
 Aella Askew
 Then I go to go do.
 
 00:52:28:02 - 00:52:29:14
 Aella Askew
 The tests. She's like.
 
 00:52:29:16 - 00:52:30:04
 Aella Askew
 All right.
 
 00:52:30:04 - 00:52:46:02
 Aella Askew
 We're going to give you, like, three big jugs. 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.
 
 00:52:46:04 - 00:52:53:15
 Aella Askew
 And like I had a good break before that, you know, like coming up and,
 
 00:52:53:17 - 00:52:55:07
 Aella Askew
 So she didn't expect me to.
 
 00:52:55:07 - 00:53:02:23
 Aella Askew
 Like, be calling her anytime soon. Yeah. No. And,
 
 00:53:03:00 - 00:53:05:16
 Aella Askew
 No one was going to be around at the house. It was.
 
 00:53:05:16 - 00:53:07:21
 Aella Askew
 At that time, and.
 
 00:53:07:23 - 00:53:23:11
 Aella Askew
 And I was just like, all right, Santas baby up. We're going to get all reaction hair. Yeah. No. So I went home and I was just like, we're going to trigger this baby. Went and ate something I knew was going to trigger.
 
 00:53:23:11 - 00:53:25:01
 Aella Askew
 It.
 
 00:53:25:03 - 00:53:33:01
 Aella Askew
 Did. And I got say I'm full. Brought it right into the hospital.
 
 00:53:34:17 - 00:53:44:08
 Aella Askew
 It happened to be Christmas Eve next day, I got an even stronger reaction. Not on purpose.
 
 00:53:44:10 - 00:54:21:20
 Amy (Host)
 And and let's take a quick pause and thank you so much for. I love to tell her story. Of course, this is not the end of the conversation and she has some really interesting mass. So, cars, stories and some great resources to share with all of you. Let's keep it more digestible, all in two parts, and we're going to come back on Friday and continue the conversation with Allen.
 
 00:54:21:22 - 00:55:00:22
 Amy (Host)
 Love the episode. I would love to have you keep fighting for the answer and gaining more knowledge about who are diseases and follow us also on social media at a Called Awareness West underscore to stay connected and informed about our upcoming episode. And also remember your story matters. The health matters. You are not alone in struggling. Until next time, keep striving for knowledge and awareness.
 
 00:55:00:24 - 00:55:08:16
 Amy (Host)
 Bye for now. 

Introduction to today's interview
Childhood and the Circus
PANS/PANDAS Diagnosis and Ongoing Challenges
A Life-Altering Injury
Medical Gaslighting and Misdiagnosis
PANS/PANDAS Diagnosis
Ongoing Challenges and Medical Gaslighting
Living with Chronic Pain and the Impact on Daily Life