Fibromyalgia & POTs

Jason is an engineering graduate who reinvented himself as a podcaster and chronic illness/disability advocate after developing fibromyalgia and postural orthostatic tachycardia syndrome (POTS). He is the host of Discomfort Zone, a podcast featuring immersive stories on chronic illness and disability that showcase our vulnerability, wellness, and resilience. He and his guests find comfort by turning towards discomfort, welcoming it, and laughing at it. 

Jason is the youngest of three kids and the proud uncle of his nephew and niece. He was born and raised in Toronto, Canada where he currently lives with his Mom and Dad. On occasion, he helps with the dishes and does his own laundry. In his spare time, he can be found throwing grapes in the air, trying to catch them in his mouth, dropping them, dusting them off, and trying again.

 

 

s8e9 Fibromyalgia and POTs TRANSCRIPT

Lita T  00:08  Hello, and welcome to another episode of podcast dx, the show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita, Ron is not with us today.

Jean  00:20  And I'm Jean Marie.

Lita T  00:21  Collectively, we're the hosts of podcast dx. And today's show, we're talking about Fibromyalgia, POTs and chronic fatigue syndrome with Jason Herterich. I hope I'm getting that right. He'll correct me in a minute (laughter) Jason is the host of a podcast called "The Discomfort Zone", and co host of the podcast, "Invisible, Not Broken". He's joining us today from one of our favorite cities, Toronto. Hello, Jason. Thanks for joining us today.

Jason  00:35  You are Yeah, thank you so much for having me. I've been looking forward to this.

Jean  00:56  Thanks. Yeah, actually, I just saw Margaret Atwood was posted. She was cleaning up trash outside of her, you know, on along the street in Toronto. And it looked a little bit chilly.

Lita T  01:08  Yeah, it's it's chilly here too.

Jason  01:11  It sure is.

Jean  01:12  Well, Jason, before we get into your diagnosis, and that, I'm just curious what led you to hosting your own podcast.

Jason  01:20  So it was really organic, how it happened, I had fallen really ill in 2016 and 2017. And one of my friends just suggested that I should get into listening to podcasts, I had become very, very ill. And I spent about 22 hours a day in bed. And I couldn't even handle looking at a TV screen,

Jean  01:42   Mhhmm

Jason  01:42   because I had such severe headaches. And so naturally, podcasts you don't have to look at, you can shut your eyes, you can just listen to them, you can tune out for a little bit. And I got really, really into storytelling podcasts especially. And they they were really wonderful in the way that they help expand. Essentially, they allow you to empathize with people at a much deeper level. And I really loved that aspect of it. But I realized that there weren't, there was a very low representation of people who are chronically ill, and disabled in storytelling podcasts. So I just sought to create my own. So I got into so I started in 2017, after I started to recover, and I started producing stories about my own chronic illness experience. And I tried to make them just very immersive stories using sound design  music and sound effects and everything to really try and engage as many people as possible. And so I've been doing that ever since.

Jean  02:46  That's fantastic

Lita T  02:47  Yeah, sounds great.

Jean  02:48  And what are some of your favorite podcasts at the moment?

Jason  02:51  Oh, yeah, I got a whole ton of I got a whole ton right here. Um, yeah, one of my favorite recently has been "Your Hustle". It is Have you guys heard of that before?

Jean  03:01  I, I. ehh... it sounds familiar.

Jason  03:04  Yeah, so it's a podcast that is produced within the walls of San Quentin penitentiary in California. And I don't know about you. But before whenever I think of inmates, they're often depicted as scary criminals who are devoid of any remorse. But really, when you get to hear their stories, you just get to understand them at a deeper level to empathize with them. And it really leaves you with this feeling that anyone is capable of rehabilitation. So that is one of them. Another one that have been hooked on lately "Unlocking Bryson's Brain". And it is a story of a Canadian man who takes listeners inside his family search for a diagnosis, treatment and cure to his son's rare brain disease. So yeah, it's it's really fascinating as like, this really incredible mix of storytelling, medical mystery, disability rights, and gene editing science. And then And then lastly, "How To Be A Girl" is a documentary of a mother raising her transgender daughter. So yeah, just just to keep this brief. At the age of three, her child told her that there was a mistake in her tummy that and that she should have come out as a girl.

Lita T  04:23  Oh wow!

Jason  04:24  So it just yeah, it navigates there. As the girl gets older, she starts going through school playdates. And when the mom has romantic relationships, so they just have very raw conversations. And I think the daughter is is my favorite part of it. It just really goes to show how incredibly wise children can be.

Lita T  04:49  That's amazing.

Jean  04:50  Yeah, those will be adding those three to our list.

Lita T  04:52  Oh, for sure.

Jean  04:54  Yeah.

Lita T  04:54  I love that.

Jason  04:55  Yeah I couldn't, I couldn't recommend them. highly enough.

Lita T  04:58  Love it. Jason, how do you balance living with a chronic illness? Actually several chronic illnesses and hosting your own podcast?

Jason  05:09  Yeah, it's it's an ongoing struggle. What has been most helpful for me is I try to make active decisions throughout the day. So I will leave alarms on my phone to just remind me to pause, whatever I'm doing consciously think about what I will do next and check in with my body see, like, do I need to take a break? Should I go out for a walk? Am I having trouble concentrating? Because usually, that's a sign that my symptoms are starting to kick in? Or, you know, do I have any obligations later in the day that I need to reserve spoons for? So really, it's an ongoing process? I try to get a little bit better at it over time. But yeah, I'm not perfect. (laughter)

Lita T  05:58  Yeah, I can....  I can understand that,

Jason  05:58  it's something that... I continue to struggle with.

Lita T  06:00   yeah, I do the same thing with I use my phone a lot. I have early onset Alzheimer's. And I use my phone constantly to, to remind me to do things. And just to keep me in check and make sure that the day is going smoothly. And I don't end up with anything surprising that really kind of goes be into a tailspin, basically.

Jason  06:25  Yeah, yeah. If you use too much early in the day, it can throw you off,

Lita T  06:29  right.

Jean  06:30   And we also use tech, we have watches that have a light diode that takes your pulse ox and pulse rate on a regular basis. And actually, it vibrates when you're starting when your stress levels are increasing. Or when you've been sedentary too long to kind of give you just that reminder, either to take a deep breath or go take a walk.

Lita T  06:50  You Right, right.

Jason  06:52  Wow, that's, that's actually incredible. I'm gonna have to get the name of that afterwards from you

Lita T  06:56   It's one of the Garmin, I know it's a Garmin, but there are several Garmin, we got it. Yeah, we'll put a link on that for our website,

Jean  07:04  or send you a message. Yep.

Lita T  07:05  Yep. So Jason, I understand that you've been diagnosed with several different really complicated and difficult diagnosis. Fibromyalgia in itself is rough. myalgic encephalitis horrible. And POT's, could you tell us what symptoms lead you to seeking out medical care?

Jason  07:27  Yeah, so this all started out just over nine years ago, it's wild to think it was so long ago, but I was a fourth year student at University studying engineering. And I was very, very active. At the time, I was a triathlete. And, you know, I was about to graduate and had my whole life ahead of me. And then one day during an intramural game of basketball, I caught a rebound, I twisted and pass the ball up court. And in that moment, I strained a muscle in my abdomen called, what is the name of it, intercostal, sorry, brain fog here. I strained my intercostal muscles, and they are muscles that are used for breathing. And so unlike if you break your arm, you can put it in a sling, and you let it recover, and it naturally gets better by itself. But with these muscles, it is really, really painful. And it is it's made even more complicated by the fact that you can't rest and recover from it,

Lita T  08:30  Cause you need to breathe. Right

Jason  08:32  Yeah, it's not easy to treat at all. And so essentially, I had to take a week off of school spent the entire time in bed. And when I went back to school, I was so far behind that, essentially what happened is I my stress levels were so high from having to work so hard. And my pain levels were already really high from the injury. And when you get pain and stress, the two just build on one another, you're more stressed out because you're in pain and you're in more pain, because you're stressed out. So it creates this positive feedback loop. And so over time, my brain just became sensitized to pain. And I as a result as well, I'm not getting any restorative sleep, so I'm just tired all the time. And so it was something I sought medical care for quite a while ago, but it wasn't until so. So the injury happened in 2011. I didn't receive a diagnosis until like 2014. And so yeah, there at that point, they were really really debilitating symptoms.

Jean  09:40  I'm sorry to hear that.

Lita T  09:40  And was that basically the Fibromyalgia that kicked in at that point?

Jason  09:45  Yeah, it was fibromyalgia and myalgic encephalomyelitis as well. I don't think at that point. My POTs symptoms had begun showing themselves my POTs symptoms. I started to I believe, later on in 2015 is when I started I get dizzy and all that. And yeah, it's it's one of those things where I know a lot of these chronic conditions are interconnected. So you catch one, you're more likely to catch another, and, and so on.

Jean  10:13  And so I think because of all the overlapping symptoms, it's hard to get a differential diagnosis. And establish that.

Jason  10:21  Yeah, yeah. Makes it a lot harder

Jean  10:24  and, and you said it took a while to get that diagnosis. What were some of the tests associated with that? And I hear you have a tilt table story for us?

Jason  10:33  I do. Yeah. So I was just very dizzy all the time. And I would find that my heart raced whenever I stood up. And so one day when I was in my neurologists office, he did a quick check. So for your listeners, POTs is characterized by a heart rate increase of 30 beats per minute when you go from lying to standing up. So this was something that my neurologist did a quick check in his office, and I tested positive and this in that test in 2015. And so he referred me for a more comprehensive test called the tilt table test, where essentially, they tap they strap you to a table. And it's, it's slowly adjust from horizontal to vertical. And at that point, my symptoms were very severe when I got in, it was 2016. And just simply lying on the table put me in debilitating pain, even before the test began. I believe my heart rate was around 100 beats per minute, before it even started when Usually, it's around 60. And so they that we started the test, but it's supposed to be a 45 minute test. But 15 minutes in, I was just in such debilitating pain just from being uncomfortable on the board that they actually had to stop the entire test. And I just thought that it was going to be an inconclusive results.

Lita T  12:01  Mhhmm

Jason  12:01   But they ended up sending a report back to my doctor saying that I tested negative for it.

Lita T  12:09  Oh?

Jason  12:09  Which, to me is

Jean  12:10  Not quite the same thing.

Lita T  12:12   Yeah. Yeah.

Jason  12:13  It didn't seem right. And I pleaded with the doctor, you know, I said, I explained to him how they had to stop the test early and how my symptoms had gone haywire before they even started the test. But my neurologist, kind of just discounted what I had said, and he accepted the results. And he completely ignored me. And I think I yeah, I believe anyways, it was only a few months ago, or earlier this year, when I just simply redid that very first test when you just simply go from lying to standing up. And I had the heart rate increase. And a new doctor that I've been seeing a cardiac specialist told me that I do in fact have POTs. So I guess the moral of that entire story was that I I guess, I guess the issue was like the rigidity of the medical system and not stressing the importance of the patient voice there, it was very clear to me that there was systematic error within the test that made the results completely meaningless.

Jean  13:17  I'm sorry to hear that. I also had a tilt table test. And the technician that was performing my test to get me at a baseline for them to start actually was telling me very interesting stories and trying to keep my mind off the fact that we were there for because I think even going in for their test because it it can be a stressful process. And it is like a disconcerting kind of activity to be going through. A good technician is worth their weight in gold because they can try to keep your mind off the fact that you're there for that test and

Lita T  13:57  and she was in pain because

Jean  13:59   right

Lita T  13:59   we had just flown out to California to Stanford for the test and on the landing or just

Jean  14:06  some luggage hit me in the head. It wasn't a big deal

Lita T  14:08  just prior to landing  the the flight attendant open the hatch on top, from where she was sitting and luggage fell out and hit her. And she had already had a neck and a head injury. So but she was tense. Let's say

Jason  14:10  Ouch!

Jean  14:23   But it's vital

Lita T  14:24   she was tense.

Jean  14:25  I think it just shows how important every individual in the medical system is

Lita T  14:29   right...