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Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we're speaking with Jessica. Jessica, thank you so much for being here today.

Jessica: Thank you for having me.

Jill Brook: So I know that you've had quite the ordeal, and I wanna do it justice, but let's, let's start with some basics. Tell us a little bit about yourself.

Jessica: Okay. I am 35 years old. I have two little ones and a husband. I was a teacher before all this happened and yeah.

Jill Brook: And you have like some advanced degrees, right? You're not, you're like a superstar teacher.

Jessica: Well, I did do like, my teacher's college, an honors degree in psychology, and then I got a master's in special education. And prior to this, I was teaching kindergarten.

Jill Brook: Okay. And so before POTS and everything happened to you, can you give us a snapshot of your life and what you were up to?

Jessica: Yeah. So I think to some degree, I probably always had a very mild case, [00:01:00] maybe not even diagnosable. Like, I don't know if I would have met those criteria, but, you know, even as a child, like I was always a little bit dizzy. I felt like, you know, my heart raced every now and then, things like that. And I couldn't always like keep up to my peers in like gym class and stuff.

Like that's always my worst grade, was always gym. And so, you know, growing up, I was always just kind of told it was anxiety, and I told myself it was anxiety, and I kind of pushed it aside for years and years. And I, I pushed hard, probably harder than I should have. But prior to all of this, I you know, I, I went to university.

I was there for nine years. I'm somebody who has like a learning disability and some other stuff on top of it, so university was hard, but top of my class, scholarships throughout. I did really well, and I finished like defending my master's while I was pregnant with my second baby.

So like within that time, I, you know, I got married, I was working full-time, I was in school full-time. I had a little one and another little one on the way, and I volunteered, and I had tons of energy and did tons of things and just pushed. And was kind of an overachiever, but like I [00:02:00] felt like, I don't want to say my life was perfect, but everything was in place.

I worked really hard. Everything fell into place. Life was good. And during my pregnancy with my second, I did get diagnosed with POTS, but it was mild. You know, my heart rate would go from like seventy to a hundred. I was a little bit dizzy. I was also super pregnant, so there was a lot of stuff going on.

And then after that, I did like a year of cardio rehab, and I got back down to basically my baseline, and I was functioning well again. I wasn't experiencing any concerning symptoms. And yeah, that's kind of where I was before all of this.

Jill Brook: Okay. And, and can I ask, like, so how old were you when you were last sort of in your normal life working, raising kids, being a mother, volunteering?

Jessica: Yeah. So, all of this started when I was 30. So even, like, when I did have POTS, even during my pregnancy, like I was off of work a little bit earlier, so I had my son when I was 28, almost 29, but it went back to normal after, right? So [00:03:00] yeah, I think everything really changed when I was 30.

Jill Brook: Okay. So yeah, the big question, then what happened?

Jessica: And what happened? So I guess like so many other people, COVID happened, and you know, I taught through COVID and the pandemic. So, you know, I'm seeing like, you know, 30 little kids, and we're wearing masks, and it was really hard, but we made it through. And then the vaccines came out, and I'm somebody who's always kind of been sensitive to medication.

Like, I tend to get the side effects that are a little bit less likely, and I never had anything like really significant happen, but, like, overall, I avoid medication because of that. So I was hesitant about the vaccine, but with work, like September before 2021, when everybody was going back we got, like, our administration sent this thing out where we needed, like, our proof of vaccination. We had, like, a vaccine passport, 'cause it was so strict that, like, we weren't allowed to go to restaurants if you weren't vaccinated.

And I was, I was, I was okay with that. You know? Okay, I don't get to go to a restaurant. But then when it came time to, like, I need to be able to work, [00:04:00] and administration and other colleagues kind of being like, "Well, you're a teacher. Don't you wanna protect your students? Don't you wanna protect your kids? This is safe and effective." Anyway, I feel like I kind of got guilted into just doing it. And before I did it, I did talk to, like, I was seeing a cardiologist, I talked to him. I talked to my family doctor, I even talked to the person that, like, administered my vaccines.

Like, what are the side effects? And I wasn't told there were any, right? It was, "It's safe and effective. You might have a sore arm." When I got vaccinated, it was, like, in, like, this big hall with, like, a bunch of tables set up. It was really weird to think back to it. It was just, like, this mass vaccination thing, right?

So we went and did it, and my first dose, I felt like I had a flu after, and it took me a little bit longer to bounce back, and I figured maybe this is just a little POTS flare, like, it will pass. And then I got my second one fairly soon after. I think it was, like, two months after or something, whatever the requirement was, and the same thing started to happen with that one.

I started to feel like maybe I'm getting a flu, like, you [00:05:00] know, a little feverish and achy and sore. Then got really tired, and I just really wasn't myself, and I didn't bounce back. And, you know, within, I wanna say, the next day to a couple days later, I noticed my heart rate kept going into, like, the 200 beats per minute area, and I was being really dizzy and having a lot of near fainting episodes in the beginning and just really not feeling well.

And then all of a sudden, I started getting really bad pain at my side and it turned out to be shingles. So they're thinking, like, something with the vaccine can change your immune system and, like, other viruses can come out, whatever. First time I've ever had shingles, and I was 30, and it was bad because I didn't think I was gonna get shingles.

So I, I should've went and got help sooner. But I just assumed maybe it's poison ivy. I was out, you know, doing some yard work. Maybe it was that. So by the time I went, I did take the antivirals, but I don't think they really helped much. But that was really, like, the turning point. I think the weekend before I went to the hospital for shingles, I went to one of [00:06:00] my best friend's weddings, and I couldn't dance.

Every time I got up to try to dance or, you know, my heart rate was in the 200s. I felt really sick, like, really, really uncharacteristic of my normal. And I, I was worried, and I, I didn't know what was going on, so that I think, like, that was really the moment when not only me but the people closest to me around me went something is going on with her, 'cause I'm not normally the only person sitting at a table by myself while everybody else, you know, is going to have fun.

So I think that was, like, you know, the major turning point. I think I had shingles, like, I was in the hospital maybe, like, two or three weeks after the vaccine, like, with a full-blown. It had been going on for a little bit by the time I went in. And even then they were like, you know, I brought it up, "I just had this COVID vaccine, and could it be that?"

They're like, "Well, maybe you're just under a lot of stress," and it seemed like everybody was just trying to, like, make it not having anything to do with the COVID vaccine. And I should say going into this is [00:07:00] this is just my experience. I'm not an anti-vaxxer. I you know, I don't wanna make this a generalization.

This is just something that happened to me. But I think it's important to share because it is so taboo, and I think there are a lot of people out there probably affected who haven't really had anywhere to turn. So with the things that are coming up, I know that this is probably rare, and I very much feel like collateral damage to the pandemic and the vaccine rollout.

So, you know, if it saves some people and it helps some people, that's really wonderful. I just wish that for those of us who were affected, there's maybe more support available. So I'll kind of get into what happened after that.

Jill Brook: Yeah, 'cause I guess it's a preview. I mean, with a lot of people, this would be sort of the end of the story, and then we'd kinda get into, "Okay, what do you wish you had learned about POTS sooner, and how are you dealing with it?" But this is really just the beginning of the challenges you started facing.

And [00:08:00] so for anybody who was thinking that the podcast was almost over, it's not.

So, so how did it go with the people around you? You mentioned that in the hospital everyone seemed to be trying to minimize the possibility that the vaccine was related. Did that keep going on? And what about family, friends? Did your, did your primary doctor get involved? What did other medical people say? Did you get help?

Jessica: Yeah. Well, it's kinda complicated, and I think it's still hard to get help in Canada. I don't know how it is everywhere else, but it feels like I have a lot of really wonderful doctors that I respect so much and who have tried to help me, but there are no tests to, like, guarantee that the, like, no, like, causation to prove 100%.

So we're looking at the timeline of things happening and, and things like that. But in the beginning, I was scared to tell anybody. There was so much pressure. There was so much, like, shame, and, like, I, I feel like I [00:09:00] even gaslit myself to some point, you know? And I kept thinking, like, "Oh, we'll just try this treatment, and I'll be better."

And I just kept thinking, like, oh, there's gonna be a quick fix. This happened so quickly. But in the very beginning, I remember with the, the big thing was I got shingles, right? Like, that's a weird thing for a 30-year-old to get to start with who was generally healthy, no autoimmune issues. Like, so I tried to report it to our health unit.

I was advised to do that by my family doctor, to just say, like, "Hey, this is an adverse event, you know? Can we report it?" And when I called, basically, they take your story, and then they have a doctor review it, and they call you back to let you know if you could have, you know, additional vaccines after that.

So when I called, I was really disappointed because they didn't even have a place for it. They're like, "Well, I guess we categorize shingles as a rash, and a rash has to occur within four days, and this was, like, two weeks later, so I don't know what we were gonna categorize it as. But we'll have a doctor look into it and get back to you."

So a couple weeks later, I'm getting worse and worse and worse and sicker and sicker in the meantime. They call [00:10:00] back and say, "Hey, good news. The doctor looked into it. It doesn't look like it has anything to do with the vaccine. You're good to get all your other doses. Don't worry about it." And meanwhile, I'm in, like, excruciating pain.

I had no idea how painful shingles could be. And I have two little kids I'm supposed to be taking care of, right? I had to take three weeks off work.

Jill Brook: And you still can't stand up without your heart rate getting to 200?

Jessica: That was just consistent. Like, it definitely got worse with time. Like, I wanna say I had, like, six months of just, like, it getting worse and worse and worse till I plateaued, so, like, we're still kind of in that early point.

But I was home for three weeks 'cause I couldn't take the pain. Like, it was really bad, and then I went back to work and, you know, threw myself right back into it. And of course, teaching kindergarten, there's a lot of like up and down, and tying shoes, and, you know, getting on the floor and getting up again.

So even though I technically was diagnosed with POTS before, I was still able to do those things, just carefully. I went back to work, and I was not able to do those things anymore. Every time I stood up, I lost my vision, my heart was racing. [00:11:00] I actually fainted twice at school in my classroom, and things just kind of gradually got worse and worse.

And prior to this, I had never actually fainted. I had felt faint, but I had never actually like full-blown fainted. And it became a thing where it was happening almost daily. And my doctors had sent me for a bunch of work. I'm really lucky that like my family doctor, we kind of had already been through the POTS thing.

She believed me. You know, we're going forward with this stuff, and she's trying so hard to help me. They did like a, like a Holter monitor, and an ambulatory cuff for like 24 hours. My blood pressure was crazy low. Like it was going to like 70 over 40. My heart rate was very, very high. I had like just tachycardia all day long.

And so we actually redid it twice because it was so, you know, not normal for me. Maybe it's a fluke. Let's try it again. So we redid the test, and the same thing came back. And I think I was getting my results back on a Monday, and I remember that Friday going to work and [00:12:00] just like I couldn't make it through the day.

Like I was holding back tears all day. I was just, I was scared. I didn't feel good. I was in so much pain. I loved my job so much, but I just knew like something's going on with me, and I need to figure it out before, what if I faint and like land on a child? Or you know, I was just so worried that, you know, something could happen.

And so that Friday, I remember leaving the school and just, you know, holding back tears, getting to my car, being really sad about it. And then of course, Monday I get to the doctor's office, and they're like, "We're gonna pull you off work until we figure this out. You know, you need time to rest. You're still recovering from shingles. You have all this stuff going on."

So then it was like sending me to specialists who were always like a year wait or two years wait, or really hard in, in Canada, unfortunately. But in the meantime, I just kept getting worse. Prior to it, I did have a POTS diagnosis. And when I was younger, I was diagnosed with Raynaud's when I was 13. But aside from that, it was always kind of blamed on anxiety, but I do feel like there was something with my heart, tachycardia, probably [00:13:00] a little bit my whole life. But just new symptoms were like my, my heart rate increased, my blood pressure dropped.

I was getting allergic reactions all the time, like, like crazy, like hives all the time, like trouble, like these crazy coughing fits that I couldn't catch my breath. Major reactions to like pressure, cold, heat, like sometimes hives that would last a day. I was getting a lot of like bladder pain and like feeling like I had a UTI when I didn't have a UTI.

My feet were red and burning all the time. I had pretty much the day I got my first vaccine till now, I have a new onset tremor and ringing in my ears that has not gone away. It's just been consistent, and I've kind of learned to live with it, but it's just always there in the background. I used to wake up, like suddenly, I think in October, so two months after the vaccine, I really noticed I was waking up in the middle of the night gasping for air, like having dreams I was drowning.

Really, really weird things. Pain everywhere, [00:14:00] really bad fatigue. So all these symptoms are coming together, and a lot of it was just blamed on POTS. And then over the next couple years, it was one specialist to another, and then they would, you know, one specialist would refer me to another specialist, and just turned into this crazy thing where I'd seen like almost two dozen specialists at this point.

And I got diagnosed with like post COVID vaccination syndrome. And one interesting thing about that was that like my COVID spike antibodies are like crazy high. I think to be positive is like 0.8 or 0.08, something like that. Mine were over 2,500, and that's as high as the test goes. So we don't actually know how high they are, and I've had this test done numerous times, and it's been consistent.

Jill Brook: Even, even much later, so this is months or years later, you still have apparently tons of spike protein?

Jessica: Yeah. Yeah. Oh, year, it's ... my last one was done four years after the vaccine, so it's four years later, and I'm still at those levels. And it doesn't make sense, and they don't really know [00:15:00] why. But just new, new issues. Like, I, I did get diagnosed with inappropriate sinus tachycardia too. I did get diagnosed with super ventricular tachycardia, mast cell activation syndrome, erythromelalgia.

I ended up having four sleep studies, and I have sleep apnea, and it's ranged from, like, sleep disordered breathing to, like, my titration study. So that's when they, like, try to figure out how to treat you 'cause none of the treatments were working. I had, like, 95 episodes an hour. It was, like, treatment emergent complex sleep apnea, where it was mostly central, so, like, your brain not communicating.

Jill Brook: But you're not getting any restful sleep either?

Jessica: I'm not sleeping. My sleep was horrible. My, I was scared to go to sleep every night. Like I, I had such a hard time just falling asleep, and I didn't know why. And it turned it out, like to be that, and they ha- they tried me on a CPAP, then a BiPAP, then a mandibular advancement device for my mouth.

Now I'm on oxygen at nighttime just to try to keep my oxygen up. And that actually has-- I feel better with that. But I've had [00:16:00] four sleep studies, and they've all showed very different things. I think what we're suspecting is like the autonomic system is just so malfunctioning that it's affecting my sleep.

And most recently, I've been diagnosed with like fibromyalgia and chronic fatigue syndrome, which makes a lot of sense, especially the fatigue piece, 'cause I'm very much a post exertional malaise type presentation. That's new to me. So basically, there's, there's been all these new diagnoses, all these tests.

I wanna say I declined very, very quickly over six months and then kind of plateaued, but then had, you know, certain things happen in my life that made me get worse and kind of changed my baseline. I almost feel like I'm just on a very slow decline most of the time.

Jill Brook: So can I ask, you said one of your diagnoses is post-vaccination syndrome, so one of the couple dozen specialists was able to determine that? And do you blame all this on [00:17:00] that, or some of it, or how does it work?

Jessica: It's hard, right? So I, I went to, like, a post-COVID condition integrative medicine place, and that's what they dealt with. And mostly they dealt with, like, long COVID.

But I have never been sick with COVID. Like, I've never tested positive. I've never had symptoms of COVID. My whole family had COVID really bad.

Didn't affect me. Zero symptoms. I tested for, like, three weeks every day, never tested positive. So, and just because of the timing of my illness, like, that's kind of what they based it on. And for them, I'm assuming this is probably, again, hard thing medically, right, to diagnose somebody with anything vaccine related.

So it's basically, like, there's a, what is it, correlation, but we don't know the causation 100%. But that's, that's the official diagnosis that they gave me. And basically, the way they explained it is, like, it really affected my autonomic system, and it really affected my immune system. And my immune system's just in, like, overdrive all the time [00:18:00] now. Maybe that's why I don't normally get sick.

Jill Brook: Yeah. And one other question. You mentioned that you had had your spike protein in your blood measured very, very high. Was that the kind of test that can tell the difference between the spike protein from the infection versus the vaccine? Or do they just know that one of the two is high or some combination?

Jessica: So I'm not a doctor, but from what I've been explained, they, they measure both. So they measure the one that's, like, from having a natural exposure, and I did have that one. So at some point I was exposed. It didn't make me very sick. Probably when my family had it, right? So I have, I guess, had COVID or at least been exposed to it enough for my body to create those antibodies.

But the other one doesn't differentiate between like the illness and the vaccine. However, research is still new on this, but from my research looking at this stuff, it is pointing to this is happening with people from the [00:19:00] vaccine more than COVID, like that very exaggerated immune response. I'm trying my best to keep up with it, but there's so much out there. You know, my gut and, like, just knowing myself and my health, I'm convinced this was from the vaccine, and I hate to say it that way, but it, you know, I've never had anything like this happen to me before, and it, it just, it happened right away.

And it happened, you know, quickly, and it just, it, it, it doesn't make sense that it could be something else. So I guess one of the big turning points of all this was meanwhile this is going on and I'm getting all these diagnoses and I don't wanna talk about it too much to, like, other people, 'cause I feel like they think, like, this is crazy or, you know.

And I ended up having a really bad episode of SVT. So in the past I've had really short runs, and I've worn so many Holter monitors and they didn't really catch a whole lot, but I do have a family history of it. But I, I ended up with this one episode where my heart rate got stuck at 250 beats a [00:20:00] minute for almost an hour.

Yeah, it was really scary, and it looked like I was having a stroke, so, like, half of my body like my face drooped, my one arm and one hand wouldn't function properly, and I was home alone when it happened, and my husband was just getting home from work. My kids hadn't gotten off the bus yet from school, and we ended up having to call an ambulance and, like, they did the whole, like, stroke treatment thing, I guess.

And they assumed that's what was happening, but they couldn't find, like, a clot or anything like that. They did catch my heart rate that high, so right away they're like , "You know, this is probably, like, cardiac related." So they sent me to get, like, an EP study done and an ablation if needed right away.

And so it turned out I had, like, really significant SVT. That feeling I had been getting, you know, telling myself it was anxiety or whatever it was, it wasn't. It was an arrhythmia. But I remember going in there just thinking, like, "I'm making them do this for nothing." Here I am sitting in a waiting room, and you know, I'm 50 years younger than anybody else.

Like, it was just [00:21:00] very, I felt so out of place, and I was so scared that they would do it and not find anything, and then just tell me that, like, maybe it is all in your head. And I gaslit myself so bad that, like, I don't know, I kept thinking that way. And then I was really scared to go have it done.

You know, you're kind of, like, half sedated, so, like, you kind of remember it and you kind of don't, and it's not a fun thing to have done, right? And they did the procedure, and I have, like, just little flashbacks of certain moments, but when they fully woke me up after coming out of the anesthetic stuff they gave me, and they told me they found it and they did the ablation and they think it worked, they, like, tried to re-aggravate that node or whatever and it didn't take, I just started crying and crying.

And the nurses were like, "Are you hurt? Are you okay?" You know, worried about that, and I was just crying 'cause I was so relieved. I was so happy they found something, that it wasn't in my head, and just made me go back to all these times as a kid and stuff where, like, I was just [00:22:00] told I always had anxiety, so I would go do something. And I think POTS or that piece kind of like interplayed with the SVT.

So looking back to it, I'd have these crazy episodes when I'd have to like get up and go do a presentation or something like that, and it would only last two or three minutes, but I remember just having that feeling like, "Oh my goodness, I'm gonna pass out." Like my heart's racing. I could hear it.

Very distinct feeling. And my whole life I blamed that on anxiety and myself. Like, you can't control your anxiety, like, this is on you. You know, from like maybe, I don't know, early teens on. So to know that it was actually something, you know, physical, it gave me a lot of more like confidence in myself of being like, "Okay, something's wrong. I need to advocate because I know my body, and this isn't normal." So we went through all of that. I haven't had any crazy 250 beats per minute since. But it was a really scary experience.

Jill Brook: Now, [00:23:00] I don't know if you're ready for this part of the story yet, but, but so you've not been working all this time, right?

Jessica: Not been working, no. Yeah, so that's something that I was, yeah, I think it's really important to talk about. So, I think so many of us who have these chronic illnesses that are kind of complicated, when we have to apply for long-term disability, it can be a little tricky, right? Sometimes we're dealing with an invisible illness.

Sometimes we're dealing with something that's just not understood very well, and I had a really, really rough time with my long-term disability insurance. So meanwhile, all of this is going on. When this all started, my children were like two and four, okay, so the, the, the demands at home were, were high.

The demands at work were high. And my health was terrible, and it just kept getting worse. And I remember just even, like, getting to that point where, you know, we start off on short-term disability, and I'm like, "It'll take me a month. I'll see [00:24:00] a couple doctors. I'll be fine." And of course, that's not what happened, and then that turns into long-term disability.

And from the beginning, it was hard being like, you know, early 30s, not their typical clientele. And they, from the beginning, right, like, I think to get approved, it took like 20 weeks, and it's supposed to take like four to six. It was just like this awful process, and there was just a lot of feeling like I had to, like, prove everything, even though they have all my doctor's reports.

Like, these are, these are readings on you know, medical devices that are showing tachycardia and arrhythmias and low blood pressure and several hospital visits and you know, a little surgery on my heart, and this low-flow TIA. They still gave me a really, really hard time. And so long story short, at my 24 month mark, they denied it going any further.

So all of a sudden, I'm so [00:25:00] unwell at this point where just to kind of give you some ideas, like, I, I need help getting dressed some days. I can't do all my meals. I can't get out of the bathtub by myself. I can't shower at all anymore 'cause it involves standing. Like, I am very limited. I am using mobility aids.

I'm on oxygen at night. I'm really not well. And they basically told me that they had their doctor look over it, and they determined that all of it was self-imposed and self-determined. So basically, I'm doing this to myself.

Jill Brook: Whoa, whoa, whoa, whoa, wait. We gotta pause a second. You're telling me that after you had been through all this, seen all these specialists, waited years to see some of them, they wrote it all down in your chart, they made you do the Holter monitor test three times 'cause they thought maybe the, the machinery was broken the first couple times because the numbers were so wild.

After this, they [00:26:00] had their doctor take a look at your records and decide that all these other doctors were wrong and that you had made this up or self-imposed it?

Jessica: It's even worse than that. So I should have mentioned, as soon as I went on long-term disability, they sent me for a psych eval. That was the first thing they did. And it was like they're, you know, they hired a doctor to do it, whatever, and I was really worried about it, but even he determined this was not psychosomatic.

Like, he looked over my file ahead of time. He said, "You know, this is consistent with what I'm reading. She seems very reliable." Like, totally believed me. I didn't think I had anything to worry about. Then they get this medical examiner to, he's supposed to look over everything, including that, right? And he's not a psychologist.

Like, you know, this is not even his area. And he decides that it's all in my head, and I'm doing it to myself, and my actual reason on my letter was, like, lack of care. So meanwhile, I've gone to, like, [00:27:00] hundreds of appointments, seen dozens of doctors, tried dozens of treatments. Nothing's worked. I'm still trying treatments, and they're like, "This isn't consistent with somebody with a illness that would keep them from working."

Jill Brook: Wait, lack of care as in you hadn't tried hard enough to get treatment?

Jessica: I think it's that I wasn't like, I did, I was on some medication stuff, but I didn't have like a treatment that was guaranteed to fix me, basically. Like, there wasn't something set, like, you know.

Jill Brook: Oh man, I can't imagine how that would've felt. So here you are, so sick, little kids, and all of it not your fault.

Jessica: Yeah, I think it was really hard because getting this sick this quick at this age was just so life-changing to start with, right? You lose your independence. You can't trust your own body. I'm using mobility aids. I'm not able to care for my kids the way, like, for the first couple years they were in daycare whenever they had to be home 'cause I couldn't take care of them.

And like you just lose such a big piece [00:28:00] of yourself. It's such a, you know, you're giving up so much. I remember going to my children's school and, like, I wanna be there for, like, their report card, parent-teacher interviews. You know, there's some things that are really important that I'm gonna push myself to go to.

My husband's with me, of course. And I'm there using my walker, and I'm running into, you know, people, I live in a small town, so people that I know, and they're, "Oh my God, Jessica, what happened to you?" And I can't even talk about it without bursting into tears. Like it just, it's such a mess. And so I'm dealing with all this emotional turmoil from becoming sick and losing so much, but at least I have my benefits.

You know, I have my healthcare is part of it, my pension, and I'm getting part of my income, and at least I'm contributing in some way. Then they take that away, right? And like, I'm on really expensive treatments. I have a child with, like, life-threatening allergies and an autoimmune condition, and like, our medical coverage is huge.

And they're, they take it away, and they tell me that, "This is because your illness is self-imposed and self-determined." And it was, I can't tell you how low, [00:29:00] I've never been that low before. And overall I tend to be, like, a very perseverant person, and I can push through a lot of things, but like that was a point in my life where I've never experienced de- depression, you know, like that before, and just really, really struggling. And that was just the beginning of it, right? I thought, "You know, I'll appeal or I'll get a lawyer, and this is gonna get sorted out, and it's gonna be fine." Well, part of that is I asked for my file so I could look through my whole file, and I find out that, A, they're like, there's so many inaccuracies within my file, and B, there's things that they did that felt very, like, violating to me.

So they filmed inside of my home, like from the road, like if I had a window open, and meanwhile I live in the middle of nowhere on a dead-end dirt road and never thought I'd have to, like, worry about my windows, you know, my blinds being shut all the time. And I have two little kids who are running around, and one's still in diapers, like, you [00:30:00] know?

Jill Brook: So like they had a private investigator type person filming through your window. Why? Why would they do that?

Jessica: So they had it written down as it was supposed to be spontaneous activity outside of my home, but I barely left my home. They also sent them on the, the week of my birthday because apparently that's like a good week to represent real life. So it was very sneaky.

Jill Brook: 'Cause wait, wait, wait, just so I understand this right. They are trying to prove that you're not actually that ill, so they're trying to capture video of you acting healthy? Is that what it is?

Jessica: Yeah. So I remember, like, on my birthday, my husband brought me to a local plant store that's, like, 10 minutes away from us to pick out a plant. That's all I wanted to do, and, like, they filmed us going in. They filmed us coming out. I was holding onto him the whole time and they're like, "She's not using her mobility aid."

It was just silly. That didn't really matter at the end of the day anyway, but the thing that really caught me was they filmed inside of my house. Like, so from the road, [00:31:00] you know, and I had no idea they did it, and after that, I just became very, like, worried all the time. I didn't want my kids to play in the front yard.

I'm keeping the blinds closed. There's no natural light in my house anymore because I'm just worried all the time, right?

Jill Brook: Well, and also why are they that out to get you is my question.

Jessica: I don't know, but I think it's because I'm young and I'm an expensive case. This is a chronic illness. I had several doctors at this point write down that this was lifelong you know, that we exhausted all treatments. Like, so I think it's because I was an expensive case because of my age, so they went really, really hard on me.

Jill Brook: And I also sometimes wonder if you're setting a precedent.

Jessica: Yeah. I don't know. Nobody could really explain it to me what was happening and, or why, why it went the way it did.

Jill Brook: Okay, so, so then what happened?

Jessica: Yeah. So then, you know, for about a month I tried to look into the appeal process, but realized I'm appealing to the same, [00:32:00] you know, group of people that have already decided that they believe this medical professional or medical examiner's opinion that this was self-imposed. So I ended up contacting a lawyer, and I got my file, and I read through it multiple times.

There's like 1,100 pages of documents from, you know, medical stuff. But then realized, like, they had all my Facebook account printed off and my husband's Facebook account printed off, and, you know, their surveillance had, like, followed him to work to know where he works and knew what time my kids got off of the bus, and it was just very disturbing.

And so at this point, I'm, like, broken, and I know I needed help. So we got a lawyer. The lawyer was pretty good, believed me, helped me out. But the process was awful. Like, it took almost two years. So no income, no nothing for two years. The stress was the worst part. I feel sicker now than I did, you know, before this happened, just because of the stress of trying to deal with this and how much [00:33:00] it's taken out of me.

And just even, like, that financial hardship, right? Two little kids, two Christmases, four birthdays of just, like, being worried about finances the whole time. And then also going on at the same time, we're building a house. We're building an accessible house next to my family so that I have help, and we're halfway through the build, and then my income gets cut.

You know, like, it was just-- it was really bad timing. So we go through the litigation. They do, like, a discovery, and the first time we're gonna go do discovery gets delayed by, like, five months, which is frustrating for me 'cause I've already waited all this time. And then the second time we go to do discovery, all of a sudden they want to settle.

So I'm thinking, "This is odd, but maybe it's a strategy." And it was, like, a week before or a couple days before, like, right before the discovery's supposed to take place.

Jill Brook: Wait, wait. Can you just tell people a little more what discovery means?

Jessica: Yeah, so it's basically where they go over everything. So they go over everything that was done. It makes everything more official. They kind of can examine [00:34:00] me and my lawyers examine my DA, so my disability advisor, who was the one who ultimately made these choices. And like throughout this, there's a lot of things that happened that weren't appropriate.

Like at one point she's like, "Maybe you should be on Ativan. Talk to your doctor about taking Ativan." Like just, it made me realize very quickly that she didn't understand this illness, and I even tried to like advocate and I sent her like Dysautonomia International's website and like things to try to like, maybe she just doesn't know better. And I kind of got to the point where I knew that it was gonna be okay. Like, they wanna settle this this bad. Like, maybe they're realizing how awful this has been for me, right? And so in the beginning, it was I, I didn't care about a bunch of money. I just wanted to be back where I was supposed to be.

So I wanted my legal fees paid for, I wanted to be reinstated, I wanted my benefits back, and I wanted like, my pension contributions. Like, kind of if this never would have happened, this is where I would have been financially anyway. And then we had put in some stuff for, like, pain and suffering, 'cause obviously this [00:35:00] process made me sicker.

It was super, super stressful. I dealt with depression I never had before. It was awful. And I guess it's standard to sign NDAs and confidentiality agreements so you can't talk about this, and I couldn't bring myself to do that. It didn't feel right. I didn't care so much about getting money for pain and suffering as I did for being able to keep my voice and being able to talk about this.

And because, like, even throughout this process for me, every time I would find somebody else who went through something similar and try to reach out to them, they're like, "I'm so sorry, I signed an NDA. I can't say more than this." So I'm hitting a wall constantly because this is how the system works, and even my lawyer was like, "This is standard."

Like, everybody has to sign a confidentiality agreement. I'm like, "I'm not doing that. If I have to do that, we're gonna go to court." And then there's, like, all these crazy, like, Rule 41 if they make a settlement offer. And I, I remember talking to him and being like, "Well, what do you do if at this point it's not even about the money?"

It's something awful happened to me, and it wasn't fair, and I need to [00:36:00] be able to talk about it. 'Cause if I can't talk about it, then I can't advocate, and they're gonna just keep doing this to more and more people.

Jill Brook: That's such a big piece of this, and I just wanna say thank you because I don't know if people listening understand this, but all these people who can't talk about it means that they can't help the other people or warn them or give them tips or share what worked for them. And so you are, are special that you cared enough about that to, to work to preserve that, and I'm sure sacrifice some of the, some of the payment you could have gotten in order to keep that.

Jessica: Yeah, but it was so worth it. And, like, I think through all of this, as hard as it was, it, I kind of found a different kind of strength going through it. I don't, like, a little bit, little bit more of a spirituality thing of, like, maybe this is a path that's part of my journey. I'm supposed to be on it.

I always wanted to help people. That's why I got into teaching, so maybe I'm helping in a different way by advocating those such things. And [00:37:00] even, like, my lawyer was shocked that they agreed to it, that they agreed to not have a confidentiality agreement, and that's why I'm talking about it now. And I don't wanna generalize 'cause I know that, you know, I'm not saying all insurance companies are gonna treat people like this.

I could not believe that this is the way I was treated. I could not believe that I didn't have more help from my union. I couldn't believe that they're allowed to do this, and that, like, the way that policies work, they just delay things, and they make, they, they starve you out. They, you know?

And that part's awful, but, like, at my lowest, I kept thinking, "If I was a single mom going through this, I would've lost my house. I would've lost my children. I would've lost all my healthcare." Like, I'm so lucky I had my husband. My husband and I have been together since we were 13. He's watched me go through all of this.

He supported me so much through this, and, you know, great family and friends too, but not everybody has that. And if I didn't have that, I don't know what would've happened to me. I don't know if I'd still be here. It [00:38:00] was, it's one thing to have a life-changing illness happen to you. It's another thing to then be told that you did it to yourself, pull out your safety net that you thought you would have.

And I just remember thinking like, "So you guys pushed me to get this vaccine." Like, this is all kind of intertwined, right? So I'm, you know, because of work, I need to get this vaccine. I get this vaccine, I get really sick. The benefits I paid in through work are now telling me, "Too bad," you know? And just there was this illusion of safety that I really believed in, and having that ripped from under me made me just, it was an aha moment that, okay, now I have to fight for this.

And I didn't fight for it alone. I had a lot of help from family and friends and my husband. But even your benefits, like, I'm on oxygen at night. Like, I need that. That's, you know, that's gonna be really bad if I don't have that. And even if they would've made a mistake and I wouldn't have paid into my plans, I'm not eligible to be covered anywhere else.

My health is so bad that, like, no insurance company is gonna help me at this point. You know [00:39:00] what I mean, like, I'm non-insurable. So they're cutting this off and then telling me, you know, "You're good enough to work." Meanwhile, I'm not even well enough to be insured anywhere. So we ended up having to pay our premiums for me and my family the whole time while all of this was going on, and they were eventually, like, reimbursed to me, which was great.

But I couldn't have done that if I was by myself.

Jill Brook: Right. This would've broken almost anybody, and they would've been able to win because you would've been so desperate to settle sooner for just anything.

Jessica: Exactly. And honestly, we were desperate, but like, and we had this conversation, you know, like, "We're struggling here. We need to do something." And I remember telling my husband, like, "I won't be able to sleep at night if they take my voice," like, if I can't talk about this, if I can't help, if I hear about this happening to one other person, and I know that maybe by sharing what happened to me...

So on top of the legal thing, I'm trying to now go back to it in more of a positive light of [00:40:00] not being super angry and blaming them, but something has to change. So I'm writing the letter that's gonna be, you know, showed to the heads up about my case and the things that happened, and all the evidence, because I have it because of litigation, and then recommendations of like what they can do moving forward so that this doesn't happen again.

And I didn't sign an NDA, and I'm hoping that if this happens to somebody else, they'll be able to come and talk to me about it, because I didn't have anybody, right?

Jill Brook: Yeah. Yeah. Well, and, and something that, I mean, comes to mind for me is that, you know, I think we all assume that if there were some of these great injustices happening to people, we'd hear about it, and because we don't hear about it, then the safety nets must work, the compensation programs must work.

Jessica: Yeah.

Jill Brook: Everything must work.

But what I'm hearing from you is they might work and [00:41:00] they might not, because people in a situation like you are generally signing NDAs in order to be able to survive to make sure that they can't talk about it.

Jessica: Exactly. And I did find a couple other people who actually, very similar POTS issues, who are in the middle of litigation. So we were able to talk about it with each other, right? They haven't signed anything yet. I haven't signed. And we are finding, oh my gosh, they're using the same strategies. Like, there's like, you know what I mean?

There's this whole thing they, when they start off, they call you and they're so friendly, and like, you're lonely, right? You're stuck at home, you're bedbound, and they're, they seem so compassionate, and they start being like, "Well, what can you do? Do you have any hobbies?" Meanwhile, they're just gathering information.

You know what I mean? Like, like, looking back at it now, I'm a big Swiftie, and one of her songs is If You Feel Like It's a Trap You're Already in One , and that was that moment. Like, this is, this is a trap. They are trapping me. They are getting me to play a game that I don't know the rules to, [00:42:00] and I'm so sick, and I'm barely surviving, and I don't have the capacity to like, you know what I mean, analyze everything I'm supposed to do.

So if it's okay, I have a list of things that if anybody else is going through LTD, this is recommendations I would give to you.

Jill Brook: Yes. So LTD is long-term disability.

Jessica: Yeah, long-term disability, yeah.

Jill Brook: Yeah, so this is, this is what you fought for. This is the ability to help others.

Jessica: Yes. So, yeah. So if you're going through this, things that I didn't necessarily do and I wish I would've, or things I did do that helped were you need to know your contract and your coverage.

And you know it's gonna be like a 200-page document and super hard to decipher. And it got to a point where like I read two pages a day just to understand it. And of course, I did this after the litigation started. I should have done it earlier and things would've been different. But you need to know your contract.

Apply for, at least for us in Canada, we have CPP disability, which is like our, you pay into it, like anybody [00:43:00] who's working pays into it. And they kind of, my insurance company kind of didn't want me to apply for that. Because that has a way stricter cutoff than my LTD policy did. So if I applied for that and it got approved, it didn't give my LTD company a huge leg to stand on, if that makes sense.

Yeah. So I applied at, what was it, like 33 or 34, and I was told like it's really hard to get in. It got accepted right away. Like that's how severe this was, that, and they have, there are things like you can't work at all. It's not 60% or 50%. It's you're unable to work at all. There's no gainful employment.

And that got approved on the first shot, which is like unheard of, especially at my age. So if I would've done that right away, none of this would've happened.

Jill Brook: Oh, okay.

Jessica: Request your file every six months and review it. My file was littered with errors and mistakes, or like they twist things. Like I was on a stationary recumbent bike for a while trying to do a little bit of like a CHOP protocol, [00:44:00] and they decided that I'm biking around town or, you know what I mean?

Like they just, they twisted things so badly. Document all communications. So I, I got to a point where because of my learning disability too, I requested only to be contacted through email. No more phone calls asking me a million questions that I can't process. It was too hard. So that was really helpful.

And then if you do have other disabilities, 'cause I know POTS is often comorbid with other things, ask for those accommodations. Like I have learning disabilities, I have ADHD. You know, there are certain communication accommodations that I needed that were refused, that weren't followed, but I didn't know I was allowed to like insist that they were.

And at least in Canada you can. Ensure proper medical information is collected. They were actually missing a lot of things, because they just went to my family doctor and asked for everything, but my family doctor didn't have anything that was referred to from another specialist. So that referred to specialist, they didn't have that piece.

That's really important. [00:45:00] So I'm gonna have to tell them, "You need to talk to every specialist individually, and, like, get the information from them." Report any inappropriate behavior right away. Like, I didn't wanna make a big deal about things, but there was times where, like, you know, the whole Ativan comment was not okay.

Even though it was like, "Talk to your doctor about this," it just didn't seem right to even be suggesting medical advice, 'cause they're not doctors. Consider legal assistance if you have to. Protect your privacy. Like, I learned the hard way they will do anything, your social media, your backyard, if I went somewhere with my husband to a post office, they were filming me inside of the car. I had no idea. It's just to be aware that you could be filmed at any point. And it's hard because it's, you know, this is a condition that to some degree you have better days and worse days, and it's not, like, perfectly consistent.

Jill Brook: Mm-hmm.

Jessica: And I think it's important to really, like, explain that to your DA so that if [00:46:00] they see you sitting on a chair outside smiling, they're not gonna be like, "Oh, she's in a good mood and she's outside, so she's fine."

Jill Brook: Mm-hmm.

Jessica: From my experience, it's just any little thing will get twisted. And then at the end of the day, I was somebody who was so paranoid, who was so careful about everything, who was actually very worried about leaving my house at all, even before this, and it still happened.

So part of me was like, I should have just lived my life. I didn't go to so many things that I wanted to. Even know I had to go with assistance, you know, with a caretaker. I still didn't go when I, I should've just went to, like, baby showers, weddings. I'm not up there dancing, but I would've liked to just attend, and I didn't 'cause I was worried.

I should've just lived my life and went and, you know, had the supports that I needed in place. And it really all does feel like a game. Like, looking back at it, I'm seeing those, like, chess pieces, how they moved them and, you know, how they tried to corner me and, I won't name any [00:47:00] names or anything like this, but I found out that, like, the independent medical advisor or examiner wasn't independent.

He only worked for insurance companies. He graduated med school in the '70s, so before POTS was probably ever even recognized, right? And he overstepped big time. Because probably he didn't really understand this condition very well. And as part of my advocacy, I'm going to be reporting him to the medical board because I think he, he overstepped, and that was not okay, and I'm lucky I'm okay and everything worked out.

But like I said, if I didn't have the support I had, that decision could have ruined my life.

Jill Brook: Mm-hmm.

Jessica: Yeah. So lots of heavy things here, but I think important.

Jill Brook: Well, thank you for this list of tips, because it sounds like these are tips that are not very widely available at all. And the system gets to keep refining its methods 'cause it learns and it evolves. But if [00:48:00] everybody has signed an NDA on the other side, then nobody has a chance to learn what game they're playing before they're done playing it except to hear from the occasional person like you.

So how are you doing now? So things are a little bit settled legally. How's your health? How are you doing?

Jessica: Yeah. So like I definitely took a hit. We moved too, so I think moving at the same time as all this legal stuff was coming to an end, it was just a lot at once. I wanna say I'm in a recovery phase right now, just trying to get my energy back and such. And in case this helps anybody else, because I feel like I, I've hit every door.

I've tried every medication. I've done all the treatments. I've seen all the specialists. I'm on lists for like, what are they called, like experimental things if they come out to be in studies. Like, I'm even doing studies for the vaccine injury stuff. They've taken like my blood samples, like trying to help whatever way I can because I've run out of options, and I'm open to trying whatever I can to get better.[00:49:00]

But I've learned that for me, I can't trust my body. I have no control over what my body is gonna decide to do, when it's gonna decide to do that, and that makes life hard, especially as a parent. But I can control my mind. I can control, you know, how I'm framing things and how I'm thinking. Had a really wonderful psychologist through all of this, and I don't think I would've made it through without him either and his support.

So it's almost like I've had this like turning point in my life where all of this hardship and struggle just feels like it's working towards something else. It's part of the puzzle piece, and I'm hoping that I can do things that bring me joy, and one of those things is I advocate to help other people who are struggling.

And in my case, these conditions seem to be like genetic. I have children who are presenting some symptoms and like at least I know enough about this to help them, right? Like, to advocate at [00:50:00] school and stuff like that. It, it showed me who my real friends are. You know, I have friends who still make it out of their way to come and visit me.

Jill Brook: Does that imply that you also lost a lot of friends?

Jessica: I think a lot of my friends were through work, and when all of a sudden you're gone, you know, just so I think some of those friendships, like great people, but just they were more convenient.

Jill Brook: Mm-hmm.

Jessica: And I'm not a convenient friend anymore. I hate to say that, but I'm not. I can't make plans ahead of time. I can't drive by myself, so I'm not going places. You know, like I am so limited. But I do have a handful of friends that I've had since high school and even like elementary school who still make it a point to come out and see me when they're in the area, and even if it's for a short visit, 'cause that's all I can handle, you know, they still come out.

But I do have some friends that like it. That was the hard part kind of realizing. And like I know I'm at a busy point in my life, too, where everybody's having kids and getting married and, you know. But yeah, that, that's been [00:51:00] really tricky. But it's funny 'cause it's almost like the relationships that made it through this far are so much stronger because of it.

Like even with my husband, like we talk about things have been so hard the last couple years, and we've never been stronger, and it's, it's not what you would expect, right?

Jill Brook: Oh, yay. That makes me so happy.

Jessica: Yeah. It's just I think I really found my people. If anything good has come out of this, I've learned how to prioritize my energy.

I appreciate little moments. I really try to focus everything I have on my kids, but they're growing up so fast that like, you know, they're needing me less and less, and it's good and it's bad in a way. And I learned that I'm stronger than I thought emotionally and morally. Like I'm such a stickler for rules and normally such a people pleaser, and to have to kind of go against the norms and go against those expectations, I know I'm gonna upset people, and people don't wanna hear this, and it's so hard for me to do because I am a people pleaser. Somebody has to do it.

Jill Brook: Mm-hmm.

Jessica: I don't know. [00:52:00] I kept telling my lawyers, "If you need to throw me under the bus to make this happen so this doesn't happen to the next person, do it," and they didn't throw me under the bus. But I just found this, I don't know, this need or this strength or for things to be fair and right.

I think I've always had a very strong like justice, if that makes any sense.

Jill Brook: Mm-hmm.

Jessica: And I never had anything like this happen to me before. And for all of the stuff, you know, the vaccine stuff, the legal stuff, all of these things that feel so unfair to happen all at once were awful, but there's just, it's almost like I've evolved a little bit because of it.

You know, the things that used to bug me don't bug me anymore. Yeah.

Jill Brook: Wow.

Jessica: Yeah.

Jill Brook: Well, congratulations for surviving this and having your humanity intact, and for having it strengthen you instead of break you, and strengthen your marriage instead of break that.

Jessica: Hmm.

Jill Brook: [00:53:00] And it's really, really amazing to see somebody go through so much and to stay positive. And so you're such a good example to us, and I just, I know everybody listening just hopes that your life is just so much easier from here on out.

May things just be simple and easy and just for you.

Jessica: Yeah. You know, it's, it's interesting 'cause I'm, right now I'm helping a couple people. We're trying to figure out how to change to get a billing code for POTS. We don't have one. Like, there's so many, there's, I've, I'm really found so many little ways to, you know, advocate and make a difference for our POTS community.

At least I'm trying my best to with the energy that I have.

Jill Brook: Oh. Wonderful. So, okay, future POTS patients, if you're listening to this in 10, 20, 30 years, your life could have been tougher, if it hadn't been for people like Jessica working wherever she can to help make it easier. [00:54:00] Was there anything else you wanna say? You've said so, so much and I feel like you've ended on a amazing, positive note, and my hat is off to you. Is there anything else you wanted to say?

Jessica: I think to anybody dealing with, like I know I'm dealing with a couple things, but POTS specifically, couple pieces of advice. Trust your body. I think this is so often brushed off as anxiety, and that's so damaging. So trust your body. You know your body best. You need to find the right doctors, 'cause some doctors aren't gonna believe you.

So you need to find the right team, and it's hard, and it's really hard when you're not feeling good. And you need a support system. Do what you can. I know it's hard to socialize and such, but to make that support system, and take care of your mental health. Like, if you can do it, see a psychologist, a counselor, or even maybe you have family or somebody to talk to about these things, 'cause they're heavy and they're hard.

And you're not alone in all of this. And [00:55:00] hopefully things get easier with time and with recognition of this illness, and the post-vaccination piece as well. Or anybody dealing with long COVID is probably dealing with something similar, right, with long-term disability and not fully understanding it. So I'm hoping that this little bit of advice will help somebody out there that needs to hear it.

Jill Brook: Amen. Well, thank you so much, Jessica, and thanks for taking your energy with us today to help everybody listening who might be in a similar situation.

Jessica: Thank you.

Jill Brook: Okay, listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening. Remember you're not alone, and please join us again soon.