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Episode Info

Episode Info:

Brianne talks to Tema Smith about ankylosing spondylitis, the realities of fatigue, and living with chronic illness in the Canadian healthcare system.

Transcript

Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

I just got back from a 10-day trip around the western half of the country and I’m very excited that I’ll be staying put in New England for a while. I’ve also been feeling more functional lately so I’m crossing my fingers that this feeling sticks around and I can start releasing transcripts at the same time as episode audio again. 

This week I’m talking to Tema Smith about ankylosing spondylitis and the very long journey to diagnosis. Tema’s story is a good reminder that even in a dense urban area with socialized healthcare, it can still be incredibly difficult to figure out what’s going on.

Before we start, here’s my disclaimer:

This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Were you healthy as a kid?

Tema: So as a kid… This is actually good, because I have practiced my answers now. As a kid, I think that I… I don’t want to say I was unhealthy. I got sick a lot. So that was the full span of, you know, ear infections, having my tonsils and adenoids out and getting tubes in. I lost a lot of hearing before that had happened. To, you know, obviously like all the kids of my generation, I got the chicken pox, I had a lot of flus and I also had some weird stuff. So like I had scarlet fever, which like, yes, it’s a strep infection, but I don’t think that many people get full blown scarlet fever in this day and age.

Brianne: Yeah, like it doesn’t feel like a modern times thing. It definitely feels historical.

Tema: Yeah. And for sure I thought that they were going to burn my teddy bear, like in The Velveteen Rabbit. I was really scared and really upset about it. And I’m grateful I don’t really remember it that well. I have some tiny memories. One of them being, actually when I think about it, schools still had nurses, which is crazy. And I was at school and I got really sick. Like I was just like burning up and they sent me to the nurse’s office and the nurse was trying to get in touch with my parents. And this is before cell phones, so you know, here’s this kid with an extremely high fever in the nurse’s office in the middle of the day. And my mom is out with my brother somewhere, doing what moms do.

Brianne: Yeah, like whatever it is.

Tema: And my dad I guess was at work, but he was in a meeting and the receptionist didn’t know where he was and it was a whole thing. And eventually I think if I remember it right, and I don’t know, my parents will correct me if I remember it wrong. Eventually, they managed to get my dad and then he had to run over to pick me up from school. And it was like a whole thing.

Brianne: A whole drama. And when you were a kid were you in Canada or the States?

Tema: I was in Canada.

Brianne: Just in terms of health care access and stuff, I always think about it. Because I talk to lots of people from both, and I know both systems.

Tema: Yeah. So thank God I was in Canada. And not just in Canada but in Toronto and living in downtown Toronto. Until I was nine we lived a three-minute walk from hospital alley where all the teaching hospitals are. So you know, I always joke around a bit how lucky we were that my mom could just put me in a stroller and be at an emergency room in two minutes.

Brianne: Oh, yeah. And I feel like the opposite of that with Toronto is I’ve been to the emergency room in Toronto before and when I was released it was like, “Oh, I can just take… I can literally get on the streetcar home.” One time that I was admitted to the ER from a bike accident I left my bike where it was, also two blocks from everything, and went home. And I was just like, “That’s really easy. I’m so glad.”

Tema: Right. Yeah. There really is something to be said for the fact that we have those major hospitals right downtown. It helps me so much now, and I’m sure we’ll get back to this, but when I have to go for MRIs and stuff because they’re always at bizarre hours and it’s never an access problem because it’s downtown, which is fabulous. And also that Toronto was structured the way it is, because I know in other places downtown is less accessible than Toronto downtown is. So basically as a kid, for the most part I was healthy except when I was sick.

Brianne: Yeah. That makes sense. Like that’s a real thing.

Tema: Yeah. And I feel like in many ways, that’s sort of the normal way to be. Like normal in quotes is that most of the time you’re healthy, you’re doing sports and dance and whatever else it might be. And then you get sick and then a couple of weeks later you’re better and you’re doing your sports and your dance and your whatever again. And that was very much my childhood. I might’ve gotten sick a little more often than some other kids, but I was never… I wasn’t sickly.

Brianne: Right. Yeah. That word was just in my head too. Like, whatever that means. It definitely has a connotation.

Tema: It definitely has a connotation and I think of, you know, gym class as a kid. And I remember there was one kid who had some sort of a bleeding disorder and basically if she got knocked she would have a nosebleed and it was like, you know, this sort of myth of fragility of some kids. I was never that kid. And I played baseball with my dad and brother. I played basketball with my dad and brother. I went to dance class. I was in a lot of music programs and was a musician. Like I was an active kid. I learned to swim and all of this stuff. Swimming was a little more complicated because I had tubes in my ears and you couldn’t get those wet, but that was a whole other thing.

Brianne: Oh, okay.

Tema: Yeah. That was like, I guess because they literally allow drainage from the inner ear so you can’t get any water into your ears when you have them in. So I had these medical-grade silicone earplugs, so I learned to swim a little later than the majority of the kids because I needed to be…

Brianne: Careful.

Tema: Yeah. And I needed to be old enough to make sure that those were in right. So there’s really funny pictures of me, total city kid, in a bathing suit on the roof deck of our apartment building with these giant earplugs getting hosed down by my dad with a garden hose.

Brianne: Great, you’re ready.

Tema: Yeah. That was like my version of swimming until I was eight. But yeah, in the grand scheme of things we lived downtown, if you learned to swim, it was a swimming class. I had other friends who also did not know how to swim, so it was not so crazy.

Brianne: Like isolating.

Tema: Yeah.

Brianne: Yeah. That’s fair. City life. Okay, so then at some point, obviously, things must’ve shifted either in your experience or in your brain or the way that you thought about your health. So what did that look like? Like the transition from, “I’m a healthy person who gets weirdly sick sometimes” to like “something is happening chronically?”

Tema: Yeah. So that was slow and not anyone’s fault really, how long it took to sort of diagnose what was happening as chronic. But it really was 20 years of something chronic happening before I got a label of “this is chronic.” And it all started when I was about 12 and I had what seemed like a flu. But at the end of it, and I have no memory of this, my mom tells me I crawled out of my bedroom, that I couldn’t put any weight on any of my joints. And she was like, as a mother would be, completely freaked out.

Brianne: Were they also visibly swollen?

Tema: Yeah. Yes. They were like red and swollen and I couldn’t put weight on them. And she rushed me to the doctor. And we were really lucky that we had a doctor in a teaching hospital who was a very wonderful doctor. And she literally called upstairs to the rheumatology department and was like, “I’m sending you a kid.” And they saw me pretty much right away from what I understand of the story. It was the same day, like we just waited around until they had time and they tested me for lupus and for rheumatoid arthritis and maybe some other things, but all blood-based diagnoses and it all came back negative.

Brianne: And all autoimmune, antibodies, those types of diagnoses.

Tema: Yeah, exactly. Yeah. So every single one of those is autoimmune and there’s a simple blood test. And so they did that and they all came back negative and so they said, they came to the logical conclusion, which was, “This is a virus. Let’s give you some aspirin.” And I always jokingly say I must have been in really rough shape if they gave a kid aspirin because I know all the warnings on the label are like, “Do not give this to children.” But I was taking aspirin daily for quite a while and I remember I got well enough to go to camp and loving having to go to the nurse’s office to take my aspirin because it was after mealtime and I got out of having to clean the table and do the kitchen shifts and everything like you do at camp. And it was the greatest thing that ever happened to me. And I wasn’t that into the athletic stuff at camp at that time anyway, it was a music specialty camp. So I didn’t really miss out on anything and I got better.

Brianne: Yay!

Tema: One day I was fine again and whatever, everything was normal. And I went to high school and in high school I had injuries, but nothing scary really. You know, one day my knee started to act up and they said, “Oh, this looks like runner’s knee. It’s probably growing pains. Your body’s changing.” You know, all that stuff they say when you hit puberty. I went to physio. My dad had thankfully really good insurance, so I had like no limit to my physio. And did that for a while, started swimming more, whatever. At the same time in the music world… so I was pretty serious as a violinist at the time and I got really severe tendinitis in my hands. I saw a musician specialty doctor, he said, “This is coming from your back.” He was like, “But you know, it seems to be muscle related, so swim and do this and do that.” Again, nothing unusual. A lot of my friends had tendinitis. It kind of comes with the territory of practicing that much. I had to relearn some technique, take some time off, iced my hands a lot, started swimming all the time. So it was a good thing I had learned by this point. [laughs]

Brianne: Yeah, low impact, whatever.

Tema: Yeah, exactly. And you know, eventually that got better too. I think at this point it was my last year of high school. It was either my second last or last year of high school. I woke up one day and I couldn’t really move my hip, and went to the emergency room and… It was my last year. And they were like, they x rayed it, they didn’t see anything, but they could see I couldn’t really put weight on it or move it well. So they gave me crutches and tylenol 3s and sent me on my merry way. I got an elevator key at high school. It was great. Everyone wanted to be my best friend because we were a four-floor school. So being able to take the elevator was great. It was so fabulous. And yeah, I was on crutches for a while. But at that time I’d had a really severe ankle sprain a couple of years prior and everyone’s sort of diagnosis of what was going on with my hip was probably that my ankle… Sprains are so notoriously hard to rehab that my ankle was probably the root of the problem.

Brianne: Like, you did that and then that threw off your whole gait and then your gait being off would hurt other mysterious places?

Tema: Exactly. And especially because it was the same side. So it was my right ankle and my right hip. So nobody thought anything of it. I went to a sports med doctor and she said, “Yeah, I think this is your ankle. Let’s send you to physio.” So I went to physio, did some work on that. This sort of trend of like hip goes funny, blame the ankle, continued for another 10 years. Where I would have these periodic flareups of hip pain and they would be, in some cases, extreme to the point of barely being able to walk and having a really difficult time functioning. And the pain didn’t really go away if I used an assistive device just because of how it functioned. So I just kind of grinned and beared it. And was on, you know, had a series of different physio interventions and you know, acupuncture and massage and heat and ice and tens machines and ultrasound and like everything at the same time. And like “This antiinflammatory’s not working. Let’s try the next one! And that one’s not really working. Let’s try the next one.” So just a whole long series.

Brianne: And did you find anything that regularly made a difference, that moved the needle? Or did it feel like all of it was random?

Tema: All of it felt random. Acupuncture I found really helps and I was never really sure whether it was the acupuncture itself or whether it was me lying face down on a table immobilized with no pillow. In retrospect, I think it was as much about prone lying as it was about the needles. And I love my acupuncturist and got great relaxation and taking, you know, taking the weight off of life from going to see them. And I should actually go back. I always say whether it works or it’s just a placebo, I don’t care. [laughs] That’s as good as working.

Brianne: Yeah, totally.

Tema: I did that very actively and at a certain point I sort of just assumed that somewhere in the series of hip injuries I had done some damage to something and I was always just going to have low grade pain. And around the same time though, there was other stuff happening. So I was diagnosed as hypothyroid in my late 20s. But that wasn’t a surprise because everyone in my family is hyporthyroid and my diagnosis, in some ways was pretty self directed. Like there’s something wrong. I’m really tired. This is happening, this is happening. Test my thyroid please and thank you. Like I was always expecting it to happen.

Brianne: “I’m tired, I’m cold…”

Tema: I’m tired, I’m cold, my hair is falling apart, my nails are brittle. Like everything. My skin is flaking off, you know, all that stuff. And my mood is all over the place. So got diagnosed and I was at… It was in the middle of when they were revising criteria. So I was technically subclinical at the time, but my doctor who’s fabulous was like, “Look, you have the family history. This number goes up every time I test it. Let’s just start now, if you want to, with the medication.” And for a while that was pretty life changing. I felt better.

Brianne: Was it a synthetic thyroid?

Tema: Yeah. So I’m just taking, yeah, I think I’ve probably been about seven years on that.

Brianne: Initially it was… hand gestures is what I’m doing, but like, a big deal.

Tema: Yeah it was a huge deal. At the same time I was having, like I had been anemic on and off since high school. But again, no one really thinks that much of that when you’re a woman and you’re anemic. So I saw a naturopath and you know, we did a whole bunch of stuff about my digestion and actually managed to… It was around the same time, she was also one of the people who pushed for the thyroid medication. And around that time, my digestion improved, and you know, everything improved and my anemia started to go away and this was great. So all of this is happening. But through it all, it would be like, I’d feel better for a while and then I’d be really tired again. And really like, just tired isn’t even the right word, like just not functioning. And I used to say to my mom all the time, “I don’t know, there’s just something wrong. I don’t know what it is. I just feel like there’s something wrong.” But I never really pursued that. I was just like, “There’s something wrong! Whatever, this is just how I live now.” And I think also partially my mom has a fibromyalgia diagnosis and we’ve poked the spots on me enough times to know that I don’t, but there was in my mind some lingering fear that they were going to give me the nebulous fibromyalgia diagnosis. And I remember at one point a naturopath had said to me that an IBS diagnosis should really be called, “I don’t know.” And fibromyalgia kind of felt like that also.

Brianne: Yeah, it feels like that to me too. And not in a way… Like those are both very real experiences for people. And fibromyalgia doesn’t have syndrome in the name, but it might as well basically. Because it’s all of these things with syndrome in the name are like, “Your symptoms are real, we don’t know what’s causing them. We’re giving you this name so that you stop bugging us.”

Tema: Right. 100%. And I just look at my mom and people, other people I know with fibromyalgia and I’m just like, “I don’t want that! What if it’s that?” And I don’t think I’ve ever said that to my mom and whatever.

Brianne: It’s understandably complicated. I am in that mess at the moment.

Tema: Yeah. And it’s just, I know the process of my mom getting diagnosed, I remember, I was old enough to remember that. First they thought it was carpal tunnel syndrome and they gave her the carpal tunnel wrist braces and then that didn’t help. And they’re like, “Maybe it’s not.” Like the amount of money she must’ve spent and probably thank god for our insurance, but like on these things because they just didn’t know, it was insane.

Brianne: And you have to just try them. It’s so many things that you have to just try for three months or six months before you even know. And then go back to the drawing board again.

Tema: Right, exactly. And you know, I really didn’t want that. So I just sort of was like, you know what, I’m functioning, everything’s fine, I’m functioning.

Brianne: And you were working, this was after grad school?

Tema: I was working. Yeah. So at this point I’m working full time. Plus I had a part-time job, and you know, a social life, like a 20something year old does. So there was also a degree where I was just like, “I’m probably just tired because I’m busy all the time.” I don’t exactly prioritize rest. And you know, I was struggling financially trying to pay back student debt and you know, there was a lot of stress. So I sort of wrote it off as all of that. Fast forward to like three years ago now, I got mono which was a thing I didn’t know you could still get in your 30s. But it is. And I was really lucky and it’s actually really funny how I got diagnosed with it. I went to my family doctor, I had been traveling around Europe, went to visit some friends. And when I came back, like three weeks after I got back, and the jet lag… In my mind, the jet lag just wasn’t going away. And so I went to the doctor and I was just like, “I don’t know what’s wrong. I just can’t shake the jet lag. Can you check my thyroid?” Like, you know, the logical thing

Brianne: That is linked to fatigue for you.

Tema: Exactly. And she was like, “Yeah, sure.” And so I guess she saw what I hadn’t noticed, which was that my face or my neck was just all puffed out. And I didn’t really notice it or I did and I just thought I had gained weight eating delicious European food. And I guess she saw it as cause enough to test for mono. So I didn’t even know she was testing me for mono. So literally I remember, I’m waiting for the subway to go to work and the doctor’s office calls and I’m like, “Oh, they’re probably calling to up my thyroid prescription.” And it’s the receptionist and she’s like, “Hi, your blood test came back, your thyroid’s fine.” And I was like, “Oh great!” And she’s like, “Yeah, you have mono.”

Brianne: Surprise!

Tema: Like, “I’m sorry, I have what?!” And it was a whole thing because my colleague was pregnant and I was really anxious to be around her even though mine was actually pretty hard to give to someone, so that was a good thing. But yeah, so all of that happened. And just as I was getting over the mono, my grandmother got very sick and passed away. And she was in the hospital for three weeks and that was a time of like zero sleep because we were all taking shifts at the hospital. And so basically I snapped out of mono, can’t get off the couch mode into… we’re a small family, so hyper-at the hospital by my grandmother’s bedside, literally I would go from work to the hospital to home every day.

Brianne: And there’s a level of adrenaline in that kind of situation I think, right? Like your stress system kicks in because you know, you just have to do it.

Tema: A hundred percent. Exactly. And so, yeah. So it was very, it was a very weird contrast from mono where I could barely lift an arm to that. Towards the end of that period I actually applied for the job that I now have, and happy end to that story, I got that job. And around the same time, wow, a lot was happening. I had some really bad vertigo and so I had an MRI for the vertigo, but that turned out to be nothing. It was just all these things.

Brianne: Yeah, just like weird individual things. And your tolerance for weird, maybe it was going down.

Tema: Yeah. Yes. Actually that’s a good way to put it. My tolerance to weird was definitely going down. So I start this new job and everything’s great. This is really exciting, exactly where I want to be in my career. And you know, I loved my old job and it was time to move to the next step and all of these great things. And we were going into a period of a building renewal project at work. And it’s really exciting and really beautiful. And we were going to have an event to mark the beginning of construction. And this was psychologically a big deal for the community because they had been talking about this renovation at this point for like 15 years and it was finally happening. And so I was one of the staff people who was working on this event and it was all very exciting and it was going to be one of the first things I did. And sure enough, the day of the event I wake up with a fever. And I’m like, “Oh, okay.” So obviously I call in sick and I’m like, “I can’t, I can’t do this. I can’t come in. I have a fever. It’s pretty high. I’m going to see what happens.” And the fever lasted about two days and then it vanished. And I was like, “Well, that’s… weird.” And then the next morning I woke up and all of my joints were red and swollen, just like when I was 12. And I was like, “Why is this happening? What is going on?”

Brianne: Like, that’s a weird coincidence.

Tema: Right. And at this point I was pretty much having a meltdown. So I had to go… I think the following week… I was like, “Okay, well that time it went away. Maybe it’s just a virus again. And I got a similar virus and fine.” But so I started taking Advil or whatever I had in the house.

Brianne: Anti-inflammatory pain medication.

Tema: Yeah, exactly. And just kind of hobbled around and was like, “I’ll be fine.” About a week later I had to go to Montreal for a baby shower for a family friend. And I remember at this point, I was not telling my mom about this because I was so… I was really scared and then I didn’t want mom anxiety also to make me more scared. So I had a few friends I had talked to, but like not really… But I’m sitting on the train with my mom and I couldn’t sit still and everything was swollen and it all just came out and I’m sitting on the train crying about being terrified. And my mom’s like, “Look, it went away when you were 12, maybe it’ll go away again. And if it doesn’t, when you get back from Montreal, you’re calling the doctor.” Great. This sounds like a good plan. So got back from Montreal, called the doctor.

Brianne: And had it changed at all over that time?

Tema: No. And what was really freaking me out was that my fingers and toes, and this has become a joke in my family, looked like sausages. They were so deeply swollen and all the way up to the top. It was like, you know, the top joint and around my fingernails on my fingers and toes was swollen. So if you could imagine your toe, next to the toenail there was the width of the toenail of flesh.

Brianne: Yes. That’s a good visual.

Tema: Yeah, like that’s weird. And I kept saying to my mom, “They look like sausages.” And I was sending her pictures of my toes being like, “They look like sausages!”

Brianne: Oh yeah. That’s fair, I think. That’s a valid response.

Tema: Yeah, right. And it was so crazy. So that was a thing. And I went to the doctor and she was like, “Huh, this is weird for sure.” And I’ve had the same doctor I think for about 10 years and through all of this stuff, going to her and telling her that I think I’m depressed and my thyroid is off, like everything, she’s never seen me cry. I’m in her office sobbing and she’s like, “Are you crying because you’re in pain or are you crying because you’re scared? I’m trying to understand what’s happening right now.”

Brianne: That’s a good question.

Tema: It was a really good question. And I’m so happy she asked me because I’m not sure I knew the answer. And I was like, “I’m crying because I’m scared.” And she said the perfect thing. She said to me, “Don’t worry, we’re going to figure this out together.” And I was just like, “Thank you?” I feel like so many of the stories that I hear from other people with chronic illness is that they went in and they were terrified and the doctors were just like, “It’s fine.” And so there was something so affirming in that moment, of her just being like, “I can see, I’ve known you for long enough to know that this is not normal for you.” And it wasn’t dismissive and it was just so affirming, like, “Don’t be scared. We’re going to get to the bottom of this.”

Brianne: That’s great.

Tema: It was so great. And there’s a reason I still have the same family doctor. And she said to me, “I’m gonna send you for blood work.” And she said, “We’ll do all the tests, but there’s some that I as a family doctor don’t do. And sometimes a virus will lead to joint pain. And if that happens, it’s usually gone after three weeks from when your fever went away.” And I said, “Okay, great.” And she said, “So let’s see what happens. By the time we’re done with all this blood work, it’ll probably be just around the three weeks. And if you’re not feeling better, I’ll refer you to a rheumatologist.” I was like, “I like this. Concrete steps forward. Explanations. Everything.”

Brianne: Yeah, that’s very mentally soothing.

Tema: It totally was. So blood work all came back normal, of course. And this was like two days before, three weeks. And the receptionist said to me, “The doctor asked do you want to see the rheumatologist?” I said, “You know what? I think we’re close enough to the three weeks, refer me. And if by some miracle this all goes away… But I think you should tell her I’m also worried that this keeps happening. So I think I should see the rheumatologist anyway.” And so I got referred to the rheumatologist and from the moment I saw the rheumatologist… I jokingly say like, of course it was longer to have an official diagnosis, but about five minutes in I had a diagnosis, which is insane.

Brianne: Yeah. How did that go? Tell me about those five minutes.

Tema: So she said to me, “Okay, you’re coming in with this, this and this. I see that this and this has been negative. Okay. I’m going to run some other tests just to make sure because there are false negatives, blah, blah blah.” Great. And she did what I now know is known as the inflammatory back pain screening. So it’s really simple. I’m going to forget, I should know this off by heart by now, because I work with the patient association to encourage people to do this. But basically it’s like, “Is your back pain worse when you rest or when you move? Have you had it for more than three months?” And I’m missing one. But those are the two biggies. So if it’s mechanical back pain, like an injury, it’s going to be worse when you move it than when you rest it. If it’s inflammatory, it’s the other way around. So exercise actually improves my pain, which is probably actually partially why physio helped, and rest made me need physio. But my rheumatologist was just so encouraging. She was picking up on things that I had explained away. She was like, “Do you ever have back pain at night?” And I was like, “Yeah, every night.” And she was like, “Does it ever wake you up?” I’m like, “Yeah, every night, but I’ve had my mattress for eight years, so I probably need a new one.” And she’s like, “Needing a new mattress doesn’t wake you up in the middle of the night in excruciating pain.” And I was like, “Oh yeah, I guess that is weird.”

Brianne: “What an interesting idea.”

Tema: And I was like, “Oh, I guess that is a weird thing to be happening.” And we sort of went down all of these questions and she was just so… I was laughing because, you know, whereas doctors I find are often so like, “Why are you looking into this thing?” Her answer was like, “Why didn’t you look into that?” Like, “Have you had a sore throat recently?” “Yeah, I had a sore throat with a fever recently. Yeah, I did.” “Did you get a strep swab?” “No, it just went away.” “Well, why didn’t you get the strep swap?”

Brianne: “Because everyone’s been telling me not to be a burden on the medical system.”

Tema: Exactly. I just waited it out like one does. You know, it’s just really funny. And I get it, why rheumatologists are like that, because stuff probably lands there that should have been caught when it was acute and then it’s turned into something that they need to deal with. So I totally get that.

Brianne: But you should educate other doctors. I mean, and your doctor sounds great, but it’s like, many PCPs don’t know that this is a flag and so you can go in over and over again and get labeled as a hypochondriac instead of someone being like, “Oh hey, these are all pieces of one puzzle that I could easily answer for you.”

Tema: Right. Exactly. And that was really what the rheumatologist did was she put together all of the pieces of this puzzle. And she did a bunch of back measurements that I’m now so used to, like I go to the doctor and I come out with pen marks all over my back and it is what it is. But you know, some really basic stuff that’s diagnostic. And she said to me at the time, “I’m sending you for blood work to rule out a bunch of things. And some of the things I’m looking for… what I think you have is what we call and here’s like the long name, seronegative spondyloarthritis. Which means it does not show up in your blood work.” And I was like, “Well that explains so much.” So there’s a whole bunch of markers that are… If you know what you’re looking for, you can look for all of these things to be there. But none of them mean that you have it. Like, two of the markers that she always tests for are markers of inflammation. If you have a cold, those markers are going to be up. If you are having an allergic reaction… they are not diagnostic by any stretch of the imagination. And she also told me at that time she was going to weed out everything else. So like viruses, bacterial infections, she ran alternate tests for lupus and for RA. Like everything, everything. To the point that when I went to the lab they were like, “What kind of doctor are you seeing? This is so much blood!” Which is really funny. I laughed really hard. I was like, “It’s a rheumatologist. She’s just testing everything!” We had a good laugh. And then she told me that one of the tests was going to be a genetic test and that that one was the slowest one to come back. But that, I’m going to get the number wrong. It’s between 80 and 90% of people with this condition have this gene. But they don’t routinely test for the gene because I think something like only, I’m trying to remember the actual number, but I think it’s only like six to eight percent of people with the gene end up with the condition.

Brianne: So, it’s a clinical diagnosis.

Tema: Yeah. Basically. Yeah. And then so basically it’s a clinical diagnosis based on all of that.

Brianne: Yeah, because I thought it was genetic based on my very loose knowledge.

Tema: Yeah. So, it’s actually interesting. I heard some of the researchers talking about it and they’re actually curious about whether it is an identical disease for the people who are negative for this gene who have the symptoms or whether it’s a similar disease that actually has a different mechanism and they don’t know yet. Like they really… That’s the reality. I mean they don’t even know how the disease functions really in many ways, but whatever.

Brianne: That’s the thing.

Tema: Yeah, they’re still trying to figure it out in so many ways. So basically what she said was, “We’ll do this first and depending on what this says, if it gives an easy answer then you don’t need an MRI. If it doesn’t give an easy answer, you need an MRI.” I was like, “Great.” So she sent me for an MRI and she also was very clear right from the outset that part of what doing this was also about is building a case to get the medication covere should the diagnosis come out the way she expected it would. Because obviously with expensive medication, there needs to be a good medical case for it. So all of this stuff.

Brianne: And I would add, I’m sure you know more about this than I do, but I would add that this is one of the things about Canada that’s interesting is that the government… I think people in the States especially or other places don’t know how government insurance works. And generally speaking, your government insurance, which in Ontario is called OHIP, that does not cover medication, although it may cover like in hospital stuff. But for an ongoing, you have to go through a separate system or have a private benefits package.

Tema: Exactly.

Brianne: So it’s like an added layer.

Tema: It’s an added layer and it’s an ongoing… interesting… navigation because I, yeah, I’m sort of somewhere between the private insurance system and switching to public insurance for the medication right now. And that’s a whole other… So yeah. Through the government, basically how it works is it’s called the exceptional access program of the Trillium drug benefit. And it’s basically, here’s a thing that I just learned: anyone can have the Trillium drug benefit, the deductible is based on your income. So like if you made $1 million, your deductible is going to be 4% of $1 million.

Brianne: Which is a lot of money to me, I’m sure.

Tema: Exactly. But I had no idea. Like I thought that there was actually an income threshold, like that Trillium drug benefit was for low income. So I literally just found out two weeks ago that that’s how that works.

Brianne: And that’s really interesting, because we’ll get to your medication but somebody that I talked to… So I think episode 14 came out this week, I think it was last week’s, episode 13, is someone who is also in Toronto who’s on very expensive infusions and he was talking about Trillium and he’s not working right now. But it’s like when your medication is tens of thousands of dollars or $8,000 per infusion and you need many of those like… having an income threshold is difficult because that is like. Like you say, I mean whatever 4% of a million is, I know that’s super easy math but I don’t want to do it because it’s going to depress me. But like whatever that is, some medications, I’ve talked to a number of people whose medications cost that much including in Canada where drugs are not as gouged as they are in the States.

Tema: A hundred percent. Like my medication is in that expensive category and there are, you know, I’m learning more and more and more. I’m really lucky. I have good private insurance right now, but I’m sort of in the middle of those two systems and trying to figure it how, because obviously the private system is going to change our benefits, likely to exclude my drug because of what it costs them.

Brianne: It doesn’t fit their model right now.

Tema: That’s how that industry works. And I get it and it sucks. But thank god I’m in Ontario where I have access to these alternate sources of funding. And as my rheumatologist said, when I was like, “What do I do?!” She was like, don’t worry, nobody pays for this medication. I was like, “Oh, thank god.”

Brianne: It’s not set up that way. But so you were getting lots of testing in the early diagnostic phase in order to justify medication later.

Tema: Exactly. So, they basically make you make a business case for why this is the only way to treat the condition. What’s ironic about it is that most of the scientific literature, especially the more recent literature that they’re looking at now that these medications are out, all say that actually you should go in heavy early in the disease. And that in some cases that might actually force remission, that by the time it shows up on an MRI or x ray, you might be too late to force remission. Which is funny because the criteria to qualify for the medication is that it needs to show up on MRIs or x rays. So, you know, a little bit of science and business in competition with each other. And I get it, they’re really expensive medications and I think they want to be sure that only the people who need them are getting them. And I think also from a medical perspective, you don’t want to be shutting down parts of people’s immune systems unless that needs to be happening. So it’ll be interesting to see how that evolves. And early disease treatment is not going to be a thing that I ever experienced firsthand, because by the time I got diagnosed there was radiographic evidence. So she sent me for an MRI. It was a full hour in the tube. It was awful.

Brianne: That’s a long time.

Tema: It’s long, it’s long and it’s all three. It’s upper back, mid back, low back. So it’s three 20-minute MRIs basically. And it was awful. I had taken ativan to get through it and so my mom had to come and hang out because they don’t let you leave if you’ve taken a sedative without somebody coming with you. But we lucked out. It was like a mid day on a Saturday. So we went out for dinner and we made a mother-daughter date. It was great.

Brianne: You had a nice relaxed time.

Tema: Exactly. And then the waiting game began, waiting to see the doctor. And I saw her and got the official diagnosis. So it’s so funny because it’s like 20 years boiled down to really… I saw her for the first time in September and she diagnosed me in very early February, so like say four months which felt like a long time while it was happening. But at the same time, when I look at the fact that 20 years of no answer boiled down to just waiting between tests to get a definitive answer. And that was the story.

Brianne: Yeah. So what are the criteria specifically? And then also, I have questions about pathology, I guess. So what is known about what’s going on in your body? And then where is the medication intervening?

Tema: Sure. So…

Brianne: As much as you know, because I know that might be an in-depth question and I definitely don’t have a medical degree.

Tema: Yeah, I don’t have a medical degree either, but I have read everything that is in language that I understand. And I jokingly say that for somebody who didn’t take high school bio or chem, I know more about the human body than I ever thought I would. Including the fact that there’s a part of your body called an entheses, which I had never heard of in my life. And that is the magical place that is the root of all of this drama that I deal with. So the entheses is basically the layer between your soft tissue and bone. So it’s the insertion points, is the entheses. So what happens is for some reason inflammation happens in your entheses and then your body is like, “Whoa, this is inflamed. I need to protect myself.” And it builds new bone. So the pain is a combination of the enthesitis inflammation pain, and then also some of the weird mechanical pain that happens when your body puts bone where it shouldn’t. And one of the reasons that they go to MRI now as a first step rather than x ray is that you can see your bones preparing to make new bone before you can see the new bone. So one of the things, and of course I had to go Google everything because that’s how my brain works. Not like doctor Google, but like, “This is a thing they said about the MRI. What does that mean?”

Brianne: Yeah, “What do all these words mean?”

Tema: Exactly. So one of the things was bone marrow edema and I was like, “Well that sounds like swollen bone marrow. What the hell is that?” And it turns out that’s exactly what it is, that when your bone is preparing to create new bone, your bone marrow spreads outwards because marrow’s at the middle of new bone. So when they see the marrow starting to creep outward, they know that your bones are getting ready to create more bones. Basically, that’s very unscientific.

Brianne: And that technically doesn’t happen to very many people.

Tema: Exactly, like your spine in your 30s should not be increasing its bone mass. And part of the problem and why the bone building stuff is so dangerous is that… I mean your spine functions on being flexible and if between your vertebrae is new bone, it’s going to stop being flexible. So in my mind that explained a lot of that low back stuff that I was having. Fun thing I also learned is hip pain you feel in your groin, low back pain you feel in your hip.

Brianne: Okay. Just like how your brain processes the nerve information kind of?

Tema: Yeah, and I think where the soft tissue hurts is also where the mechanical pain is. So I have hip pain that I feel on the inside of my groin muscles. But that excruciating pain was low back pain.

Brianne: It was actually spinal.

Tema: Yeah. And so it was, sacroiliitis was at the root of it. So that’s the first thing they look for with AS is sacroiliitis. And there’s different grades depending on whether there’s fusion or not. Bone marrow edema. Because they can look and it can just be inflammation of your SI joints and that can be for any number of things. But once they start to see a whole bunch of things together… So I had sacroiliitis that actually does show up on an x ray. And I also laug because they x rayed my hip so many times, but never my low back, which again, I don’t think there’s anything wrong with that. They were looking for damage to the hip joints, not thinking like, “Oh, it’s going to be SI.” Which, why would you, when the pain is shooting down the side of my leg and it’s clearly not sciatic. They did rule out sciatic pain really early. And so that was really, for me a big surprise, because that’s a part of your body… Like, I feel like I don’t really think of where my pelvis joins my spine as even being a joint. It’s weird, but of course it is. And then I had a few other spots up into my spine. So the medication basically intervenes… I call it a bandaid. Like they know that tumor necrosis factor is involved in the inflammation, so the medication that I’m on targets that. So it’s a TNF inhibitor. So it binds to the molecules and sort of stops the inflammatory process. So basically it doesn’t get to the heart of why the inflammatory process is happening. It just knows a molecule that’s involved in it and is like, “Go away.” And that’s really… So I know some of the interesting research that’s going on is trying to figure out why your TNF goes wonky to begin with. And also some people don’t respond to the TNF inhibitors and so now they’re looking at other parts of your immune system. And I know that they’ve identified two like interleukin parts… And these are words that I know are part of immune stuff, but I have no clue what they are.

Brianne: Yeah, yeah, I get that. That’s fair.

Tema: Yeah. Like I’ve even googled and read “What is TNF?” And I’m just like, “This is a lot of words I don’t understand.” And I’m happy with that.

Brianne: With many other words.

Tema: Yeah. Like, okay, I can’t really go down a genetic rabbithole of trying to understand my immune system right now. So I’m just gonna read this and know the part that’s a problem.

Brianne: No, that was a very good explanation of a specific thing though. And I think this is… so it’s not autoimmune, but a weird process is happening, we don’t know why, we don’t know how to stop it or prevent it, but we do know how to offset some of the damage, which is by redirecting the process.

Tema: Exactly. And I think, and from what I understand now, they know your immune system is involved somehow. But to date they haven’t found an antibody. So that’s why it’s like, I think the official language now is that it’s an immune-mediated autoinflammatory disease. So it’s inflammation for no reason that your immune system is somehow involved in and they don’t know why. I’m like, “Okay…”

Brianne: Thanks modern medicine.

Tema: Yeah. And the funny thing about it too is I keep hearing about it being rare and it’s actually not rare. It’s not common, but it’s not rare. So it’s very interesting and you know, the thing is also because they’re starting to be able to diagnose it earlier and earlier, the name of the disease keeps changing. Not in meaningful ways, it’s not changing in meaning, but it used to be that you had ankylosing spondylitis or you didn’t. And now there’s a new updated thing where you either have radiographic spondyloarthritis or non-radiographic spondyloarthritis so they can x ray, and MRI you and not see anything but still know that you have this condition, which is a huge change in treatment because there’s enough symptoms that they can put together to say that there’s something going on. And there is a part of me that wonders if that criteria existed when I was 12, would I have been diagnosed then? Maybe. I mean it wouldn’t have mattered because the medication didn’t exist. This is the crazy thing. And I keep saying as far as times to have this disease in history, I’m living in the best time we’ve had yet. We have multiple medications and improved diagnostics. And realistically, I don’t know how much of a difference it would’ve made if I was diagnosed at 12 other than I would have had answers earlier and I don’t know. I don’t know what that would’ve meant.

Brianne: It’s hard to evaluate. I feel like there’s some kind of a, I’ll call it a spectrum but I don’t know if that’s the right word, that goes between recognizing that something is wrong and having no information about what it is, which I think can do a number on your mental health because it can feel really gaslighting depending on how you’re pursuing that. And then also being diagnosed with something that has no treatment options, which is pretty hopeless feeling. And not every condition is between those two points, but when you’re between those two points, yeah, I’d say it’s really hard to evaluate if this one’s a lot better than the other one. They’re both taxing.

Tema: Right. And also I think on the mental health front, it’s really interesting that you mention that because the constant “injuries” were doing a number on my mental health for sure. I look back at Facebook statuses, thank you Facebook memories, but it’s actually been really therapeutic for me to see these where for years I was posting about my back hurting or my hip hurting and the this and the that and everything else. And like, “Hey guys, I’m loopy on muscle relaxants again. Ha Ha, isn’t that funny?” Like just so much history of feeling not well and not knowing why and also not even not knowing why so much, but not giving myself the time to feel unwell because it was easily explained by like, “Oh, I hurt myself.” And also losing out on valuable friend time because I was in a music group for awhile and I had to stop playing with them because of when I “injured” my hip and couldn’t walk. And little things like that that were just like, “Oh, it’s an injury, it’s an injury.” And waiting for it to go away and it never 100% went away. So, you know, stuff like that was really hard. And then when I was actually diagnosed, it was like a whole other kind of mental health hardness, which was when you think it’s an injury, you’re always waiting for it to go away. When it’s a chronic condition, you’re waiting for it to flare up and flare down and you know that a flare up is coming again and you don’t know when, but you know it’ll happen. And it was a huge and expensive process of adjusting to being able to say like, “This is the new reality.” So things that I could have done years ago, but never financially prioritized. I was like, “This is a thing that I have to do.” So I bought a washing machine, I bought a dishwasher… because I always had an overflowing sink of dishes and I always had laundry exploding everywhere. But until it was a chronic condition, it was just me being too lazy to do it. And this gave me a way to frame like, “No, actually the fact that I haven’t vacuumed is because it puts me into excruciating pain.” Not, “I just didn’t want to vacuum” or “I just don’t like vacuuming.”

Brianne: I feel like the idea of laziness pre knowing you have a chronic condition, would be a really ripe subject for an essay collection. Because of exactly what you just of like, “Oh, I’m not very good at keeping up with my dishes or my laundry.” I’m terrible at those too. Or like, I look around my house and my husband does most of the cleaning now. I’m like, “Okay, now I recognize that I’m making a choice every day of like, well I could choose to clean or I could choose to do this other productive or self-care thing.” And that’s actually the choice I’m making. But before I realized that about myself, I just thought like, “Oh, I’m choosing not to do the things that are important” or “I’m too lazy to get to these items on my to-do list.”

Tema: Right. And I think that’s really… For me, those are some of the things that have been healing also, is being able to like look back at things that have happened and times that I’ve just been incapable of doing basic self-care stuff. And to look at that and be able to be like, “Well yeah, I had all this stuff going on in life.” Like the year that I was in grad school and readjusting to, I had been overseas for a year, readjusting to living in Toronto at the time for the first time since I was in high school. And I had sort of put all of everything being messy on me being down, like emotionally down. And now I’m just like, “No. All of this emotional stuff was happening for me.” Plus I was commuting from Toronto to Hamilton three days a week, which was awful. You know that commute.

Brianne: Do I ever.

Tema: I started sleeping over in Hamilton. So I was only doing the commute two days a week and that was an improvement, but it was still awful. I was so happy to be home in Toronto, but looking back, that probably destroyed to a little bit of my soul. [laughs] So I was doing that and you know, readjusting to being in Toronto and shifting family dynamics after being away for six years. I was working a lot and everything like that. And my apartment was a mess and I put it all on my mental health, not realizing of course at that time that there were some real physical reasons that keeping a cluttered bachelor apartment clean when my back was in constant pain and I was constantly fatigued was not working for me. And so being able to sort of reframe some of that stuff. And now, one of the big things was also like, we put such… and I do wonder if this is different for women than for men, but I feel like there’s just such a value thing around keeping your home. And so for me, for so long it felt like a thing that rich people had, which was having a housekeeper or a cleaning person and I’m not a rich person. And like I should… I’m young, I, you know, whatever, I don’t have kids, my place isn’t that bad. I should be able to do this myself even though I work a full-time job. Like forget the fact that it’s ridiculous. You’re working full time plus and then you’re expected also to feed yourself and keep yourself clean and keep your whole home clean. That is in and of itself, I think a statement to be made. But for a long time I just felt like a failure for not being able to keep on top of all of this stuff. And then when I got the diagnosis, I was able to say, “No, I really actually need a cleaning person to come and help me because this hasn’t been working for a decade. It’s not getting better and I’m putting up this stupid fight.” And I guess I needed to give myself permission.

Brianne: Yeah, like now I’m allowed.

Tema: Exactly. Just weird things like that. So, you know, it’s been an interesting transition to reconceptualizing what I need, and what I can do, what I can’t do. I had an occupational therapist come in and do a home assessment. I’ve been slowly spending money on her recommended changes. But even some of those are just so funny. Like she told me to get a barstool so that when I’m cooking I can sit on a chair. I have used it like twice because it just feels so weird to me to be sitting on a chair while I chop my vegetables. And then I look at it after I’m like, “Oh, I’m in so much pain!” And I’m like, “Oh yeah, that’s what I bought that for.”

Brianne: Yeah. Changing habits takes a lot of cognitive overhead.

Tema: It does

Brianne: Which I think is something that people who don’t experience this kind of stuff don’t think about, because most people only change their habits out of like, “It’s a new year’s resolution and I want to exercise more!” And it’s like, the downside of not changing your habit isn’t really present. I don’t know if I’m explaining that well.

Tema: No that makes sense.

Brianne: Most of the time when people are making a conscious effort to change a habit, the downside isn’t the same as like deep pain.

Tema: Right. And I know for me it also felt like a lot of habits at once had to change. So some of the things that I still am struggling with is like, my rheumatologist had said to me very early, “Going to the gym isn’t a suggestion, it’s a prescription. You need to be doing that.” And I’ve always been somebody who goes to the gym on and off. Like I get really into a routine and then something throws me off and then it takes me like a year to get back into the routine. And add that to working full time and just being tired all the time and it’s really hard. I finally got into a routine and then I pinched a nerve in my back over the summer and that screwed it all up. And now I guess that got better at the end of September. And then I went on vacation and then I went this and dah dah dah and now it’s like my gym fees come out every two weeks and I’m just like, “Oh yeah, that’s a thing I need to do. Maybe I’ll do it tomorrow.” You know? And little things like that. So it was like changing that routine. Also being able to acknowledge that I’m tired and sometimes I need a nap and that needs to be okay. So also, this is a weird way to describe it, but I feel like it’s the only way to describe it, that my routine has to be not having one. Because days are just so different. Like I had such high hopes for the five days off I had over Christmas. Like I knew Christmas Eve was with my mom and Christmas Day was with my dad and boxing day was home. And you know, Saturday and Sunday was like whatever I wanted it to be. And I was like, “I’m going to read and I’m going to write and I’m going to this…” And like literally I binge watched SVU on my couch with a blanket for like two and a half full days. And on Christmas Eve realized that one of the things I wanted to get my mom, I hadn’t done yet. So ran to the mall on Christmas Eve.

Brianne: Ooooooooh.

Tema: Yeah, it was actually shockingly not terrible. I feel like this is the most Toronto thing ever. But I got there and it was just people who don’t celebrate Christmas. It was like the most ethnically diverse day at the mall,

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