Episode 56 – Alicia

Alicia, a white woman with long brown hair, smiles at the camera. There is a stylized purple hexagon framing the photo.

Alicia K. Anderson talks psoriatic arthritis and weight loss surgery and traveling while chronically ill.

Transcript

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

Before we start, I wanted to share that I have a new piece up on Medium this week called My Disability is Dynamic. In a lot of the conversations I have on the podcast and on social media, we end up talking about where chronic illness fits in the disability community. Some of us might talk about invisible disabilities, but that’s never felt like it described my experience. My needs and abilities fluctuate so much from day to day that I need people to understand how dynamic it is more than I need people to understand that it’s invisible. Anyway, you can read lots more about that by heading to my Medium profile at medium.com/@bennessb. And yes, the at sign is necessary.

And of course, here’s a quick reminder that I have a patreon campaign, which is a really simple way for listeners to support the show financially on a monthly basis. So if you’ve been enjoying the show and you also have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight.

This week I’m talking to Alicia K Anderson about psoriatic arthritis and weight loss surgery and a whole lot of other components of life with chronic illness.

And I want to add a content note to this episode to let you know that Alicia discusses disordered eating briefly at the beginning of the episode, and also to let you know that we talk about weight a lot. We talk about weight loss and weight gain and weight loss surgery, and of course we’re talking about all of these experiences in the context of chronic illness.

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: Okay. Well, let’s get started.

Alicia: Let’s get started.

Brianne: I like to start by asking people, how was your health as a kid?

Alicia: Great. I actually was a super active kid. In infancy I was allergic to certain kinds of milk and I had to have soy formula. But all the way through my early childhood, I was extremely active. We lived in the middle of nowhere. And I was surrounded by animals and farming, essentially.

Brianne: Like the perfect environment for your microbiome according to every book that I’ve read about that.

Alicia: And, you know, by the time he was in middle school, I was big into horses. I was a total stereotypical horse girl. That was me, a hundred percent. I own it. I still have unicorns all over my office.

Brianne: Perfect.

Alicia: And I was incredibly active that whole time. Now, I did have some self esteem problems, and so I was concerned about gaining weight even when I was 12, and I had some really wonky eating patterns that continued for quite a long time into my life that messed with my metabolism and made it so that I ended up yoyo dieting pretty much my whole life. And have had like weight problems my whole life. Mostly when I was a kid, it was under eating for the activity I was doing. Okay. Um, I was hiking, biking, horseback riding, and like I would ride a bike to the horseback to the horse, ride the horse for five hours, muck stalls, and then ride home and then have like a peanut butter sandwich. And that’s a lot, a lot of exertion that you just described. Yeah. And fueled and fueled stuff that I was doing. So, um. That was much of my childhood. The other important piece of my childhood is that my lower back was injured three times. Um, I was in a car accident when I was eight, and this was, I’m going to date myself. This was back when kids sat in the front seat and seat belts weren’t required, and I went into the windshield, um, and it compacted several discs in my lower back, and basically the answer was suck it up. That’ll go away. You know, kids are resilient. They

Brianne: bounce back. The

Alicia: only thing my pediatrician told my mom was, um. If she ever gets injured again, it’s likely to reinjure the spot. It’s likely to happen again should something happen.

Brianne: Okay. So these discs specifically are more vulnerable

Alicia: or cargo? Yes, my lower back is now like prone to squishing. And so it started when I was eight. When I was 12, I fell off a trampoline and Ray squished them. Um, and then under 16, I got bucked off my horse with. Sailing through the air and landed like I probably was 20 feet in the air. Oh my God. And um, landed on the ground and, and re compacted my discs in my back.

Brianne: And for those two second injuries, did you, was there any additional problem or did it mostly feel like that same original injury had been Agra, aggravated as maybe a gentle term for what happened,

Alicia: but, well, it re compacted them, they come back. It’s like, imagine that. Sponge that’s predisposed to squishing now. Um, and so it just, basically the cartilage in my back is especially, um, prone to that kind of injury. Um, so yeah, it was, it was like. Massive back pain for like a couple of weeks each time. Um, and in both cases it was kids bounce back and the doctor said there was nothing we could do about it. Here’s some Tylenol.

Brianne: And how effective was that? So did it mostly go back to normal after? Yeah. Okay. At the time it did,

Alicia: it mostly, it mostly went back to normal. But the reason why it’s important to bring up is because, um, I learned much later in life. First of all, that I was really used to ignoring lower back pain and pushing through it. Yep. There’s also an old Axiom that is where you injured as a child, you will have arthritis as an adult.

Brianne: Oh, okay. Which makes sense, but,

Alicia: and

Brianne: so what they tell you when you’re the kid,

Alicia: right. They don’t tell you that when you’re eight, but, um, yeah. Uh, so. That kind of foreshadow is where we’re going to end up with the psoriatic arthritis and my lower back being the worst part of, of my pain. Um, but overall I was. It’s really funny because looking back, I don’t, I consider myself an artsy person, not an athletic person. However, I was very athletic

Brianne: as a kid,

Alicia: pretty much the whole time. Um, I was a varsity fencer in college. I was really into like all of this stuff. Uh, by the time he was an adult. Um. In my thirties, I was running duathlons, which is where you run and then ride a bike and then run again.

Brianne: Um,

Alicia: it’s, yeah, I was doing in endurance style fitness. Um, I was backpacking on the Appalachian trail, so like carrying a 40 pound pack and going 60 miles in a week was like fun. Um,

Brianne: of course it is.

Alicia: Um, now. In the midst of all of this, I, I was really struggling with my weight pretty much the whole time. Um,

Brianne: and what did that mean for you? Just like as an experience?

Alicia: Um, so, uh, I am, well, let me back up just a little bit cause it’s kind of a fun, a fun journey. Um,

Brianne: I’m ready.

Alicia: I, uh, always kind of went up and down by. 2030 pounds at a time. Okay. And then I’m in my late twenties. Was the first of the weird illnesses that cropped up where I kept falling asleep while driving, cooking, standing normal human things. I was in 15 car accidents hole and um, my partner at the time was like, you’re going to go get a sleep test right now. Something is

Brianne: happening and it’s not safe.

Alicia: Like I had literally had a cup of coffee and was on my way to a job interview. And I fell asleep behind the wheel. Like this was not about arousal level. This was something is wrong with you.

Brianne: It wasn’t like really long commute, like normal fatigue risk. Yeah.

Alicia: Okay. Um, so I had a sleep study done. This would have been God like over 20 years ago now. Um. Had a sleep study done. And by the way, sleep studies, if you’ve never actually done the ones where you go to the sleep clinic or like a spa day.

Brianne: Okay, I’ve only done a take home,

Alicia: so, Oh yeah, no, no, they’re a spa day. They like, they feed you and then they go, okay, now read a book until we come in and tell you to take another nap. Just relax. Exactly. It’s amazing. Um. So, uh, this leaves city was inconclusive. Uh, in order to be diagnosed with narcolepsy, you have to have five or like three of the five symptoms or something like that. I did not have sleep apnea. , you know, they had me hooked up to everything known to man. I had, I had like this Medusa, wires and everything.

Brianne: Those are in time, especially compared to take home. I keep showing you my finger, but that’s because take home is like basically just a cuff on your finger. It’s a whole other world.

Alicia: I’ve, I’ve done a take home one subsequently and it made me look like the Borg.

Brianne: Oh

Alicia: really? Wow. It’s like a hat. Um, but yeah, my husband’s take home was, was the one on the finger.

Brianne: But, okay, so you do it. You don’t have the criteria for, you don’t meet the criteria for narcolepsy.

Alicia: I don’t meet the criteria for narcolepsy. I absolutely do not have restless legs. I do not have sleep apnea. I don’t have any of the other sleep disorders that they have ruled out now with this study. Um, but I didn’t fall into REM sleep quite quickly enough during my nap. Okay. Would be narcolepsy. Sure. Um, so I was diagnosed with idiopathic hypersomnia, which translates into, we don’t know why you sleep so much, and just

Brianne: because I’ve talked to other people who have been given that same very meaningless diagnosis. Exactly as you say.

Alicia: And it doesn’t, it doesn’t like,

Brianne: I mean, one, it obviously doesn’t really mean anything, but two, it doesn’t. Describe even kind of what you’re talking about. It’s not just that you were a sleeping a lot, it’s that you were falling asleep a lot, which is different actually.

Alicia: Um, and I did have some of the things of, of narcolepsy, um, including like REM intrusion, which is practically like schizophrenia, where you have like dream intrusion on your daily life. Okay. So I can be like writing an email and suddenly I’m writing a dream, which is bizarre.

Brianne: Yeah, it sounds like it would be very disorienting to put it lightly.

Alicia: Um, so the way that my neurologist dealt with this first, he said, well, maybe it’s atypical depression. And so they tried to put me on some antidepressants. None of those worked.

Brianne: Okay.

Alicia: They either made me sleepier or angry, so it was like, okay, that’s not a good plan. Well then they started me on stimulants. Okay. So I was on Adderall and I was on Adderall for a while before the XR came out, and then the extended release came out and I was on that for a while. And that’s like a schedule two drug. You have to like do all of these hoops to get it. Um, and the fun thing about being on a simulator when you don’t really need a stimulant is that it may think bipolar.

Brianne: Okay. I was going to say, how was that? And it sounds like it was a real. Journey.

Alicia: So then I was on Adderall and lithium.

Brianne: Okay. And had anybody, did they think that those were connected since it sounds like, yes. Now you know that they were, but at the time were they like

Alicia: this is a side effect. My diagnosis was chemically induced bipolar.

Brianne: Wow. Okay. And, and lithium, I know, cause I’ve spoken to a number of different people who have taken lithium and it is. Like anything like variably effective depending, but can have heavy side effects where you’re already experiencing heavy side effects.

Alicia: Well, the really fun thing is, is that the Adderall is a weight loss drug and they Lithium’s a weight gain drug. And so I hummed along pretty well without any problems. Okay.

Brianne: So together they were balancing,

Alicia: they were balancing each other at the same time. Am I, uh, was getting into some of the more complimentary therapies. I went to a chiropractor who, um, I went because I had fallen and reentered my back. Oh, no. And so I went to this chiropractor and she did kinesiology muscle testing. And, um, she goes, you’re having a really, really strong reaction to wheat right now, and I need you to stop eating it. Okay, right now. And then I was like. I want it. Hey,

Brianne: let’s also talk about muscle testing for a second, cause I think it’s come up on a few other episodes and I do know what it is, but it’s strange.

Alicia: It’s strange. My husband, who is like very medically trained, has gone to this same chiropractor because I sworn by her for over 20 years. Um, and, and his only response after like quizzing her was. It’s woo, but it works. Yeah. It’s,

Brianne: it’s like having that happen. Having that happen to you, being the person who’s being tested is so weird because, so basically they expose you to something, maybe. So I don’t know how your person

Alicia: doesn’t mind. They put it on your belly and a little vial.

Brianne: Yeah, I was gonna say, yeah. Like I held a vial in my left hand, I think, and then I would hold out my right hand and they basically. Whatever I’m, they’re pushing on they, they push against your Palm maybe or your forearm for resistance and, yeah. And as they’re checking against different things, sometimes the resistance, like you’re not able to fight them anymore. Right. And the theory is, and I’m just, I’m talking about it this way, like I’ve had the same experience that it’s so weird, but that whatever the vial is, is what’s causing you to experience muscle weakness, which, yes, yeah. Who knows? But. Why is it happening?

Alicia: Um, so fun fact, my, um, acupuncturist now has taught me how to do my own muscle testing for myself and actually made me do muscle testing around the grocery store for foods. Whoa. So I looked hilarious. It’s really, really, yeah. So more on that later. So I had been in Haida set up to understand food problems because my mom has food allergies and has had them since I was. 10 okay. So my mom had to cut out soy, wheat and corn, no corn, wheat and dairy, corn, wheat, and dairy when I was in middle school.

Brianne: Okay. So

Alicia: I’ve been, I’ve been reading ingredients and cutting out ingredients for my whole life, like from the point where I learned how to meal plan, I knew how to do it without corn, wheat, and dairy,

Brianne: which would, those are the big ones.

Alicia: Are some pretty big ones. Yeah. And so, um, so that was one of the things where for me cutting out wheat was kind of like, okay, I’ll just apply that skill. But the funny thing is, is that like my cats were using wheat cat litter. Um, and cause I, I wanted something that wouldn’t hurt the dogs if it got into the, you know, if they ate it or something. And so, um, so literally I had to like. Claw litter claws on my pillow at night that were also wheat, and it was like, Oh, good Lord.

Brianne: Yeah. Exposure is everywhere.

Alicia: Yeah. So I cut wheat out of my diet and life, um, in that way, and I lost 60 pounds in six months.

Brianne: Wow. And just wheat.

Alicia: Just wheat. Yeah. Um, like not even all gluten. Like I was still eating rye. I was still eating like, like just wheat. And, um. So I have been fully gluten free since 2005 in 15 years. And this is back when it was hard to do. Yeah. There’s so much stuff.

Brianne: It’s so easy now compared to now, like 10 or 15 years ago. Cause yeah, I think I. Have dabbled that long.

Alicia: Yes. So, but the thing is, is that because my mom has been through the food allergy cycle for so long, I actually knew even then, how did you, a two week elimination diet, cut it out, test it afterwards, learn what your symptoms are, whether this is something you can live with or not, and, and move on from there. So like I kind of was set up to succeed in terms of learning that, that process, well, it turns out that it was the gluten. That was making me so tired. I no longer needed all of those meds because I cut Clayton up.

Brianne: And so, okay, so in the moment when you had started the Adderall, the Adderall stopped the falling asleep.

Alicia: Yes.

Brianne: It was not the falling asleep, but you still, it sounds like we’re aware of a level of fatigue, are aware of your energy levels as they were.

Alicia: Kind of, especially if I miss the Adderall.

Brianne: Yeah. Yeah. I guess that’s a really easy way to know like, Oh, hello baseline. You’re still very tired. Okay, so you, yeah. So after cutting wheat, ultimately you cut gluten. Is that what happened? Was it kind of a next step and then you discover even with that Adderall, it feels okay,

Alicia: that’s, it feels awesome. What a world, so I went off the lithium and the Adderall. Um, well, so I had lost 60 pounds cutting out the gluten over the course of six months with my neurologist and my psychiatrist on board. I went off the other two meds. And, um, I basically gained enough weight to be above my insulin resistance threshold. Which I learned about later. I don’t know about if, if you know that with insulin resistance you have a weight threshold. There’s a very specific scale weight where if you are under it, you lose and gain weight like a normal human being. If you are over it, your body is a fat making machine and insulin resistance rules today,

Brianne: right? Cause you’re just like pulling sugar out of your blood all the time. Right into fat because you can’t fat

Alicia: process it. Exactly.

Brianne: And that would be, is that different for every person?

Alicia: It is different for every person, but I, I know mind now and, uh, with the, the change in the drugs, I actually went above that threshold and then I packed on, I’ve packed on 50 pounds in. I think the course of four months.

Brianne: Okay, so

Alicia: both of your are yo-yoing. Yeah, both. Just like

Brianne: that loss and that gain would be very like rapid and significant since they’re both like 10 pounds a month almost, it sounds like.

Alicia: Yeah, it’s, it’s pretty huge. And so that. That is, that has been my experience with my weight is that it is giant swings. It’s pounds a month for six months. It’s, and it’s, and it can go either way. It can be the loss or the gain, depending on what all I’m figuring out at the time. Um, the interesting thing is that the clooten reaction that I learned with my gluten reaction is suspiciously my psoriatic arthritis.

Brianne: Hmm.

Alicia: Um, it is entirely likely that I’ve been dealing with psoriatic arthritis, this whole climb and that the fatigue of like this was all miss, miss or undiagnosed psoriatic arthritis the whole time. Cause the way that I described my gluten reaction when I was still learning it when I was in my early thirties, what like 15 years ago was, um. It’s like having the flu and a hangover all at once. I was like, I, I’m achy all over. I’m exhausted and I have a migraine and I’m emotional and like learned all of these things. The other thing, because I’m a giant nerd, I would do, um, baseline and with a gluten reaction IQ test. Whoa. Yeah. And my IQ dropped by 15 points. Yeah. It was the whole standard deviation.

Brianne: I was gonna say. Yeah. So what is the normal, okay.

Alicia: Yup. It is a full standard deviation. Um, so it dropped by 15 points when I had a gluten reaction. So the idea of brain fog. Like, that’s brain fog. Yeah. And it’s, the experience is this was easy yesterday. Why is it so hard right now? And, and just that concept of, of the fact that your IQ literally drops, like measurably drops is, is pretty huge.

Brianne: Yeah. Certainly there was a lot to say about IQ testing broadly, but like with one, with yourself as the subject and just being able to see how you perform at two separate times, like that’s really noteworthy. Yeah.

Alicia: Yeah, and, and it’s replicable. Like you can do it. This is how I am when I feel like this, and this is how I am. When I feel like that and it’s, it’s pretty, pretty crazy.

Brianne: Yeah. I’m going to think about that now. That’s,

Alicia: yeah, it’s a, it’s a pretty. Sharp thing to learn. It’s a to discern.

Brianne: Yeah. Yeah. I’m going to think about that now cause I hadn’t thought about like an objective. Of course they exist, but just an exact objective measure of cognitive function in this context, I would call it.

Alicia: Yeah. Well, because we talk about brain fog, but we don’t talk about measuring it.

Brianne: Yeah. And generally when you’re foggy, you’re not like. The one thing that I want to do is take a difficult quiz, but that’s a good idea. I love it. I’m a

Alicia: total nerd, and I did. Yeah, I love that. Um, so yeah, I did. I’ve learned all of this over the years, but what I honestly think is that I was eating to the point where I was eating fairly healthfully and eating gluten free and really, and I was doing endurance racing. I think that through lifestyle I was really managing. this onset of this illness. I really do believe that because I had all sorts of weird symptoms that nobody could explain that my doctors blew off because I was in my thirties. That all kind of add up, like in hindsight, it’s like, Oh yeah, that was also the arthritis. But it wasn’t until I’m coming up on my three year anniversary was three years ago. I was under extreme stress at work. Um. And it was extreme stress. Like this is going to break you levels of stress. And, um, I woke up one morning and I could not get dressed.

Brianne: Okay. And what did it feel like the barriers were, which can be a really hard thing to articulate. I know.

Alicia: Um, exhaustion was the first one, you know, just even getting out of bed. But, um. My, so I remember I was trying to put on a pair of dress pants because it was like, you know, it’s a corporate office, right? So it’s like the, the standard uniform black dress pants. And so I could barely grip them to pull them up. I had a really hard time bending my hips and lower back to get to them, to pull them up. By the time I got them to my waist, I couldn’t grip them hard enough to button them.

Brianne: Hmm. Okay. So it’s like other joints

Alicia: and I couldn’t get my shoulders to come together enough to, to, to actually bring my hands together. All joints. It was her sides and all joints. Like every one of my, my joints was just saying,

Brianne: no, not today.

Alicia: And so I texted my boss, I can’t put on pants. I’m not coming to work.

Brianne: Which you know, could be in a lot of things, but it was honest

Alicia: and I went back to sleep. Yeah. Um, the next day I got bright and I pulled on the elastic waistband and skirt that I had made several years ago, and I went to work and his, his answer was, what are you doing here? And, and I was like, I had to come get my computer.

Brianne: Yeah. I have work to do.

Alicia: I’m so stressed out. Right. Um, so I, uh, went to the doctor that day. That was the first day I went to my primary care. It took, and I saw the PA because they couldn’t get into the doctor, and the PA has her protocols and whatnot, and she’s. Basically doing the take two Advil and call me in the morning thing and I’m like, you don’t understand. We’re doing blood tests.

Brianne: Yeah. I wouldn’t, I wouldn’t be here if that was like, I’ve already been through.

Alicia: Yes.

Brianne: This basic management option. I don’t need to pay for you to tell me this option.

Alicia: Yeah. And I was like, I don’t need a prescription. I need a blood test. I need. I need a referral to somebody who can help me get out of my way. Lady. We’re doing this my way now to be a. Really clear. Um, at this point, I had worked at web MD for six years, um, with doctors like side by where the Atlanta office is, where the doctors are, um, on the editorial team. Like, it was my job to, to come up with articles for people who have illnesses like this. And so the whole idea of being your own patient advocate, et cetera, um, which I think is really just not being. Overwhelmed by the authority that doctors have. Um, I, that was something I was very strongly aware of. Right. Um,

Brianne: that they’re showing up to a doctor’s office, their expertise isn’t going to suddenly take over and point you on the best path.

Alicia: Correct. Yeah. And also also my, um. My husband’s a paramedic, and so he’s medically trained as well. He knows when things are emergent or or not, and he’s like, this isn’t something you’d call the ambulance for. I can’t help you go to the doctor. But he can also very much understand and kind of translate a lot of the stuff that’s happening. So I actually pushed for a Lyme test. Because I had friends who had Lyme and I was like, this sounds like line. This sounds like something like crazy, like it is every joint in my body. Oh, this sounds like something like that is not the flu.

Brianne: Yeah. Yeah. It’s, it’s overnight. Like everywhere that’s unreasonable.

Alicia: And that’s

Brianne: unusual.

Alicia: Everything was, was ballooning up. Every joint, every hand, every foot was, was like, too big. My shoes fit my ring. We were worried that I was going to have to cut my wedding ring off. Um, and we, uh, so we, um, I pushed for a Lyme test and it came back negative. But my pushing, um. And enough things were messed up with my blood counts that she could, she could see the squishiness of my, my hands. Um, that resulted in, within two weeks, I had a referral to a rheumatologist,

Brianne: which is pretty expedient as far as these things go.

Alicia: Extremely expensive. The other thing that happened was that I happened to have a mole check with a dermatologist the day before the rheumatologists visit.

Brianne: Okay. Okay.

Alicia: That is important because what I have is psoriatic arthritis, and that includes psoriasis,

Brianne: right? So the name

Alicia: so that the dermatologist looks at, I had gone in, you know, for a mole check, just for the ed, the annual scan, and I said, Oh, by the way, I have this really crazy dandruff that sometimes shows up in my eyebrows. Hmm. Oh, by the way, I have this really chunky, huge dandruff that sometimes shows up in my eyebrows. It sometimes shows up in body hair, like I don’t understand these big giant flakes. It’s not normal. Right? And, and so I’ve also noticed that it shows up when I eat sugar and not when I don’t. And I’m like, so is this something that like, you can give me a shampoo for? And, and so she, uh. She looks at it and she says, well, it could be seborrheic dermatitis, which is the normal, like that’s dandruff, like just a normal skin condition. Like everybody gets

Brianne: irritation.

Alicia: Yeah. And she’s like, or it could be psoriasis. And I said, well, I’m going to March the rheumatologists because of this, this, this, these paints. And she said, where are the paints. And I said, here, here, here, you know, and I, I point out which knuckles and, and everything, and she said, um, and she says, yeah, this could be psoriasis. She’s like, come back to me in a couple of weeks after you see your rheumatologist. So it’s really funny because they, neither of them jumped to the diagnosis. But if I told one of them, the other person said it was psoriasis, then he was like, okay, then it’s psoriatic arthritis. If he said it was psoriatic arthritis, she was like, Oh. Then this is definitely psoriasis. Like

Brianne: more inputs meted. Kind of

Alicia: wanted to jump to that. But since they both kind of planned it there, they were both like, okay, that’s what this is when terms of the diagnosis. Um, and so. Uh, he took one look at me and they did an X Ray. This is like the hand x-ray and the back x-ray and all this stuff. Lo and behold, my lower back is the accurate, the particular place where the psoriasis, the psoriatic arthritis is the worst.

Brianne: Right

Alicia: back to that childhood back injury. Also, it could have been a flu inflamed for a years, and I might not have noticed because I was so used to being in pain that. I just didn’t even, it didn’t register that I was in back pain. That was just part of life.

Brianne: It’s like a daily humming. Right. Um, and so what distinguishes, sorry, attic, psoriatic arthritis from other types of arthritis? I mean, obviously the psoriasis itself, but kind of what is known about how this is all playing out together.

Alicia: The easiest way to explain it is that it is a sister disease of a rheumatoid arthritis, and they’re both audit auto-immune. They have slightly different blood markers. So my RF factor, which is the rheumatoid factor, is completely normal. Um, it’s my SED rate and my C reactive protein are aware, or they can monitor my inflammation. Um, it responds to basically the same treatment as rheumatoid arthritis. It behaves in the body very similarly to rheumatoid arthritis in terms of, except for the rash in terms of, it’s both sided. It’s systemic. You have like the debilitating fatigue. Um, the interesting thing is that rheumatoid arthritis and psoriatic arthritis. Uh, affect different joints.

Brianne: Okay. That is interesting.

Alicia: So, um, if so if you, you think of a regular hand and the first joint that is like the back of the knuckles. That’s both of them. They both get that and osteoarthritis gets that one to the next one up as you go toward the fingertips. That is an RA knuckle.

Brianne: Okay, so like

Alicia: RA, RA sufferers will have that knuckle hurting the most. Okay. Go away. We’ll also have that, that, that Nichols totally fine for me. Okay. Next one up. That’s by the fingernails. By the fingertips. Yeah. That is a psoriatic arthritis. Nickel gray people will be totally fine with it. That is the one that hurts me the most and sometimes makes my finger nails hurt.

Brianne: Mm. Mm.

Alicia: And then it’s hard to type.

Brianne: Yeah. Yeah.

Alicia: Um, but it’s that kind of differentiation where it’s, it’s literally they hurt here. I hurt there, and

Brianne: we like, we obviously don’t really know why yet, but it’s happening.

Alicia: Yeah. No, it’s, um, and like for me, it’s wrists, ankles, lower back. Um, and then fingers and hands, like from here, from, from my wrist out is, is pretty much, and then it’s all four at the same time. It’s bilateral all the time. Um, but those are, I mean, it’s pretty much similar in terms of how it works systemically. Um. So often, if I need a shortcut, I’ll say that I have RA or else I have something like RA. Um, instead of delving into the, the mystery that is psoriatic arthritis has like really fun ones. Um, like Kostya chondritis only appears with, with psoriatic. Okay. Costochondritis is where you have inflammation in the connection between the cartilage and the rib. And it feels like you’re dying

Brianne: cause it’s like a chest pain basically. Like, and the experience is a nonspecific chest pain. Right.

Alicia: Or it’s, it’s a stabbing, having chest pain where you can feel a lump and it hurts if you push on it. Yeah. Um. And I did not know any of this until I felt a lump. And it hurt when I pushed on it, but it was under my breast and I had to go through the emergency mammogram deal to find out about my costochondritis. Um, so when I got sick. I did the 60 pounds again and gained another 60 pounds because I went from walking three miles a day to completely sedentary. I went from, um, you know, I had to take several rounds of steroids to help while we were trying to figure out the, the various immune suppressant medications that I was going to go on, and those take months to kick in. Um, so I had several months of pain where I was just. Inert. Okay. Um,

Brianne: and were you totally off work at this point? Were you still working from home? Yeah, sure.

Alicia: I’m from home, of course. Um, and I actually got, uh, promoted to associate director while laying in bed, basically.

Brianne: So you really were making an effort to reduce that stress, it sounds like, as a factor.

Alicia: It’s,

Brianne: it’s hard. I don’t mean that judgmentally you just like, it’s weird when you look back on this stuff.

Alicia: Well, and I laugh extra because I tried to enumerate how my life has changed since I got sick and I haven’t slowed down a bit. Um, because after, so I quit web MD because it was too stressful and I took another full time job and work from home full time. Which you know. Okay. And how was

Brianne: your cognitive function since like that had been really fuzzy? It was assisted by the dietary changes. It sounds like. So had that been more stable, cause I know it like for me, it, it ties into these things, but also like I had a really bad, you know, year that was completely foggy and now it’s much more intermittent.

Alicia: Um, it was intermittent, uh, brain fog, pain, fog. Um, the more pain I’m in, the, the, the, the foggier the, my cognitive function is, um, so I had some good days and I had bad days. Um, and it, you know, my, my employer, my new employer, I went in saying, I have a chronic illness that I’ve just been diagnosed with and I need to figure this out kind of thing. Um, so. They were pretty understanding because I was pretty upfront about it from the get go. Um,

Brianne: was okay. It sounds like, cause that can be, I mean that by itself can be a big hurdle. I know for a lot of people I’m just like, what do I say? How much do I disclose? What do I ask for? What does it look like? All of that stuff.

Alicia: It, and I just went the whole TMI route at that point. But at the same time, this is, this is almost hysterically funny. Um, I, at the same time, went to grad school.

Brianne: Okay, great. Great. Yeah, I like, I used to have stress flashbacks from grad school still, and I’m eight years out and I don’t work in that field so.

Alicia: Yeah. Um, so the way that my grad school worked is works is I’m on, I’m on leave this quarter, um, but I just got my master’s degree. I’ve been in grad school for the last two years, and I’m going into the PhD starting in January.

Brianne: Okay. And what are you studying. Broadly

Alicia: since mythological studies and depth psychology. Great. Apropos of absolutely nothing.

Brianne: No. Perfect. How has it been? Try like I, okay. I have like dreams sometimes of being like, do I want to go back to school? And then I’m like, no, you don’t. Don’t do it. But there’s something about self-guided research that feels really appealing because it’s so different to work on something that you. Chose compared to something that someone else is just like telling you what to do.

Alicia: Yeah. It’s, um, I really, I’ve been really glad that I’ve done it and I’ve been really enjoying it. Um, it’s a bit of a midlife crisis thing. Sure. But it’s also just, um, following my passion, you know? And, um, the fun thing about this grad school is that it’s mostly remote, except for one weekend a month, you go fly to Santa Barbara, converge there and have an entire weekend of classes where it is eight hours from morning till night of the same class for three classes. In a row. Okay. It’s an exhausting marathon weekend. I like that. You just cannot imagine I’m an endurance racer and it’s exhausting. I bet it’s

Brianne: like that much information that when you try to take in, I’m like making a face right now because that’s how I feel when I’m getting like new information. When I’m overloaded.

Alicia: Well, we’re all introverts and so it’s also too much peopling and so it’s like information people like you just can’t handle it after awhile. Um. However we go. So wa so with arthritis, unable to like, like I didn’t even have like the Enbrel and the methotrexate and everything like kicking in and working. I was getting on a plane and flying from Atlanta to Santa Barbara once a month. Did you go to grad school?

Brianne: And this is like one year in more or less to your diagnosis? Six months. Six months. Okay. So very early.

Alicia: Very early. And Ben, then I was flying to to San Francisco where my new employer was headquartered and working for a week. Yeah. And then flying home.

Brianne: Okay, so you do them like as a loop each one. Oh my gosh. And how is travel? I want to get back to the medication I do because I like figuring out protocol, but travel is something that I feel like I ended up talking about whenever I talk about it on Twitter. Like everyone has things to say about travel, but it doesn’t, yeah. Somehow it hasn’t come up that much on the podcast.

Alicia: Um, I actually, so I’m still friends with a lot of the people at web MD and they’re like, we need you to help us with content for this thing because you’re doing this thing. And so I’ve done a, a really goofy video with them about hiking. And I actually did a blog post about spoonie travel tips. Um, I have mastered, mastered this cause I’ve done it so much. The wheelchair service at the airport is an exercise in humility, um, and an exercise in giving up autonomy, which is really, really rough and an exercise in patience.

Brianne: Oh yeah. I almost had to flight once because a pre-booked wheelchair just wasn’t available for 90 minutes.

Alicia: Yeah, it’s, um, but the Atlanta airport, which is, I live very close to the Atlanta airport in the Atlanta airport is, um. It’s, I think I’ve tracked my steps before. It’s up to three miles from the door to the gate. Like it’s a massive airport and there is no way anybody with any sort of mobility issue should walk that airport period. Like just sit down. Yeah.

Brianne: No, that’s I, I like, I understand because airplanes are big. Like there’s a reason that Gates have to be, you know, spaced out, et cetera, et cetera. But some big airports are unreal.

Alicia: They’re really, really difficult. And the funny thing is that I’ve gotten to the point where I will. Pre, I will pre set up for a wheelchair when I buy the flight. Um, and then if I don’t need it, I don’t need it. Uh, I’ve gotten to the point now where with my exercise, I can walk up to about a mile without a break and about four miles in a day. If I’m having a really good day,

Brianne: which is know in advance,

Alicia: you can’t know in advance. And you also like. I might do that coming home, I’m unlikely to do it going because I need to bank my energy. Right. I know I’ve got a big weekend coming. I’ve got to save every last bit of energy I have in order to make it through that, so I’m not going to go on a three mile walk, even if I feel okay.

Brianne: Yeah. Yeah, and I’m like the opposite of that. I’m inverted because sleep is my biggest factor. So when I’m going somewhere, I’m most likely to be like, Oh, I love walking around. I’m carrying my luggage. I’m okay. And then I push myself for three days and I’m like, I can’t get through the security line, let alone

Alicia: for me to compare any line is way worse than the walking. Um, thing is because it’s my lower back standing is the most excruciating thing for me. Um, my husband and I, so my husband bought me one of those little stools to put in the shower. Yeah. And I fought it is that felt like I was giving up.

Brianne: Yeah.

Alicia: Um,

Brianne: there’s lots to say about that too. Just that feeling.

Alicia: Um. But that kind of assistance where I can sit down in the shower is really, really helpful. And for me, the TSA line is worse than any other part of the airport. It’s one of those, like if I could just get the wheelchair to the other side of the metal detector, I’d be totally cool with that.

Brianne: Yeah, I do not think you’re alone there because for me, it’s often with pots like dysautonomia, it’s. Walking for me cause mine’s mild enough now. Not a big deal. Standing like hell no. That’s what makes it so much worse.

Alicia: Yes. Standing is really, really hard and that, but it’s really funny cause they expect you to stand and wait for the chair. Yeah. Um,

Brianne: yeah. I’m a floor center and like in situations like that where they have not provided seating cause like, well I’m an adult and I’m sitting on the floor.

Alicia: Um, yeah. But I also always pre-board. Um, for the same reason to not have to stand in line. Um. And, and I don’t even care if I have my cane with me or not. I just pre-board. However, it’s really helpful if you already have your name on the wheelchair list, I just smile or let the flight attendant and you know, at the gate check and I go, I don’t need the wheelchair today. And I’m so happy about that. But he do need to pre-board is that okay? And there was like, Oh yeah, it’s totally fine. And then you have like this free pass to pre-board even if you are not presenting as. Having pain or whatever.

Brianne: One thing too, I, this is a general fact for our listeners, so I’ve definitely tweeted about it before. Some airlines are moving away from announcing pre-boarding. So American, I know, does it, cause I just had this experience and so when you booked a wheelchair in advance. Then they automatically put you in one of the first boarding groups, which they are not identifying as pre-boarding. So last time I did it, I think I was in group one or group two, and then when I flew without booking one, cause it was the beginning of the trip and I didn’t think I’d need it. Um, I was in group six or something, but I was listening and they never made that announcement. So you have to actually. Take action now instead of just like paying attention and making a game day decision about whether or not you’re going to need that extra time.

Alicia: Small airports are especially, um. Especially, they will just kind of scan and assume there’s nobody visual. If there’s something physical, um, that they don’t need to call pre-boarding. Um, I’ve had that happen more than once. Um, so smaller airports. I, I, I’ve been pretty, pretty consistent that it’s useful to check in with the gate agent, um, to pre-board if that’s, if that’s useful for you. Um. You know, the other stuff that with traveling is those disposable, I hate using disposable things, but honestly it’s the best thing in the world are those disposable heating pads. Um, I pack extras of those in my bag so that I have a heating pad, like kind of on demand. Should I have a problem in, in the air? I’m also a weird bottled water and and uh, snack lady. Like I’ve always got like all the snacks in my bag, which is really funny cause in his class then I’m like the mom, I’m like, Oh, do you need beef jerky? I have some trail mix. I’m the grandma with the mints in the bag. That’s me. And they all know it and they’ll all come to me when they’re like, I’m having a blood sugar problem. Do you have any? Yeah. What do you have that stabilizing. It’s, it’s pretty silly, but I don’t know who’s taking care of them while I’m gone this month,

Brianne: what they’re eating,

Alicia: who’s, who’s providing the trail mix. But, um. Yeah. So most of the travel tips are just kind of those things. I always take a jacket because they’re always cold and cold is bad for arthritis. Um, I live in heat, uh, and, you know, then there’s a level of, of, um, suck it up, honestly. But, um, yeah. One fun thing is that we, we did during one, um, of the, the. Courses of steroids. We did manage to get my wedding rings off, and I haven’t been able to get them back on ever since then. So I purchased on Amazon $15 rings at half size increments. Yeah. So that, so I was put on a bigger ring before I go fly because my hands will balloon while I’m in the air, but I carry three or four different sizes with me. That’s such a good idea. I always, because they’re cheap. Like if I break one, eh, like, this one has a stone missing, I don’t care.

Brianne: It’s not about that,

Alicia: but I want to have a ring on. And so, um, yeah, I have like these different size increments so that depending on how puffy or not my hands are, I’ve always got something. Um. So that’s, that’s been fun. Uh, the Silicon ones don’t work cause they hurt because they get much. Um, yeah. But, uh, the various sizes of, of bands help. Um, I always wear big shoes, big rings, big clothes when I’m flying because it really does make me puff up. It does increase the inflammation. So that’s been a big part of it for me.

Brianne: Yeah, that makes sense. It’s, it’s just like, it’s a stressful thing for a whole bunch of reasons in a, like emotional, but also just physical, physical stress on your body.

Alicia: But, um. I also carry everything known to man to make myself comfortable while I’m there. Like I have like the iPad, like I laugh that I’m like a princess when I travel and my roommate laughs at me too. She’s like, of course you have that in your bag. I have

Brianne: everything.

Alicia: Travel, yoga mat. I have, I have a little candle. Right. The little bell to make it like clear the room. Yeah.

Brianne: Ritual, right?

Alicia: Jeez. Yes. Yeah, well, I do the ritual because I travel so often that I have to feel at home wherever I am, or else I won’t get enough good sleep.

Brianne: Yeah.

Alicia: And so I have like my 90 90 and my little candle, and like, I turn off the lights, like it’s ridiculous. Um,

Brianne: but the fire,

Alicia: yeah. Yeah. Yeah. Um, so yeah, that’s, that’s the travel piece that got very, very good at it. Um, and I was traveling up to two one to two times a month for over a year with them. With the psoriatic arthritis in full bloom.

Brianne: Yeah, in the middle of it. Okay, so then let’s also talk about, yeah, what was the, like you mentioned prednisone, I believe, but like what was the, as soon as it was diagnosed, which happened quickly, as it turns out, then of course it’s like, okay, get this flare under control. Figure out how to manage status.

Alicia: Yes.

Brianne: All that stuff.

Alicia: So when I have flares that are unresponsive, that’s when the pregnancy alone packs come in. Um, I have had to take four of those in three years. So, um, that’s actually pretty low. Um, comparatively

Brianne: speaking for other people with, for other people with.

Alicia: Okay. Um. But they really don’t want you to have a flare and they really don’t want you to let it go untreated because like RA, psoriatic arthritis is one of the kinds that can cause permanent damage. And does. Disfigurement, where like your joints turn sideways and then never go straight again. You know, it can, it can cause permanent problems. Um, greatest Moodle lens is what it’s called and it’s not pretty. Okay. Um, so they, they want to stop it immediately if they have to. Um. Overall, it takes three months for any of the biologic, the, the TNF inhibitors, the auto immune set, the immune suppressor guys, um, to kick it. Okay. So you don’t really get a good idea of whether they work or not until it’s 90 days out. And then you can kind of go, Oh yeah, I see. Do I feel better? Yeah. And like I guess

Brianne: are my blood Margaret’s better,

Alicia: but my, my pain scale, and I’m sure everybody that you talk to that has chronic pain, pain scale is really different from other people’s. I noticed this when on one night I got a Charlie horse . And you know this really, really horrible truck like horses that wake you up in the middle of the night. They’re like, Oh my gosh, my leg is just going to squeeze in on itself. Like that feeling, that was a four.

Brianne: You’re like, Oh, that’s unfortunate.

Alicia: And that was my moment where I realized that before the arthritis and after the arthritis, my pain was very different. The Charlie hurts was like just a four. Um. I actually run into the problem that harming, like I was up in the attic and I cut the back of my hand and I didn’t notice that I cut the back of my hand because I didn’t notice the pain of the cut. I noticed the liquid feeling of the blood.

Brianne: Which like there’s probably some of the, like, uh, pain is a gateway mechanism mechanism. I had trouble with that word. Pain is a gate. Okay. It’s getting worse and not better.

Alicia: It has

Brianne: a gateway mechanism stuff going on. So when there is a stronger pain, if that straw, if the milder weaker pain can’t disrupt that pathway, then you’re not even going to feel it basically. Yeah. Right?

Alicia: Yeah. So, so small, like cat scratches and stuff like that. At this point, I’ll often look down and be like, I am bleeding.

Brianne: Thanks

Alicia: cat. And it’s, it’s kind of mind blowing when you in, when you get there. Um. For me, a seven on the pain scale of one to 10 means that I can’t complete a sentence.

Brianne: Yeah. And that even that is like different people define that

Alicia: differently. Yeah.

Brianne: It’s like a useful personal tool and a really actually completely useless medical tool.

Alicia: Exactly. Exactly. Yeah. But knowing that like, uh, with the umbral I realized that I had a, roughly, my baseline was a four. And the way my pain is experienced is that, uh, just kind of moving around day to day without doing anything. If I were inert and laid in bed the whole time, my joints would have a baseline pain level where they just hurt. It’s not a throbbing. Aching isn’t quite right, but it’s somewhere between those two,

Brianne: like in that family of

Alicia: pains in that family, and it’s just ouch for those those joints. Um, what also happens at the same time is that I get random intermittent stabbing pains. So if my general ouch is at four. I will get stabbing pains that go up to a six or a seven and spike. Okay. And so it’ll feel like just somebody jamming a knife into the top of my foot for no good reason. And then it goes away. And often I just like shake it off and then keep going. Yeah. And, and it happens in my wrists and my ankles. Um, mostly. Okay. Um, and hands and feet. And so. Yeah, so I was living at a four with, with some spikes up to six, and that was, that was where I was, and they were like, okay, we’re going to add in the methotrexate. Methotrexate is kind of the gold standard for autoimmune, uh, stuff. It is actually a leukemia chemotherapy. It’s

Brianne: come up a lot lately for me actually, but I don’t know much about it. So it’s like, now’s the time when I learn about methotrexate.

Alicia: Um, it’s pretty much the, the old school, it was the GoTo med before, before biologics came along, cause they’re all relatively new and they’re still patented. Before that, methotrexate was the only thing that really helped with, with a lot of autoimmune arthritises. Okay. It is it, they don’t know why it works. Um, I have a feeling somebody had both RA and leukemia and started on chemo and felt better. Right. That’s, that’s my hunch. Yeah. Yeah. Um,

Brianne: drug, drug research and like off label uses on all of that stuff is such a weird, weird. Space to dive into.

Alicia: Well, and it isn’t on-label use. They’ve done enough research for it to be, it’s considered a disease modifying drug, but it’s like,

Brianne: but it wasn’t developed that way.

Alicia: We don’t know why. What my experience of methotrexate is, that it gives the umbrella a little bit of the boost. What my rheumatologist said was it helps at work better. Um, which has been my experience, but really the biggest thing with message Trek state for me is that it increased the amount of energy I had per day,

Brianne: which is probably incredible.

Alicia: That’s huge. Yeah. I wasn’t dealing with the fatigue as much as I had been before. So, um, for me, it’s worth it for that. Um, at the same time, it has chemotherapy side effects, right. Which include nausea and hair loss. Um, very few people have the hair loss, but I’m on a really high dose and apparently I’m susceptible to it. And so I have about 20% of the head of hair that I had. Okay. When I started methotrexate, um, I do take leucovorin, which is a full lik acid supplement that is specifically for people on chemo.

Brianne: Oh, okay.

Alicia: Specifically for this, like, like even my through pharmacy here is like, I don’t know what the heck this is. Like

Brianne: there’s this subset of people who have this one side effect. I didn’t see one side effect 10 maybe be mitigated by this one drug.

Alicia: By this one drug that is essentially hyped up synthetic folic acid. Great. Yes. So I take that and it does help. Um, plus I take biotin and collagen. That helps too. Um, so I’m not losing hair in fistfuls anymore. Um, but it’s still, it’s really interesting still dealing with that. Yeah. Um.

Brianne: Yeah, it’s like the, I’m actually, so I’m reading this book right now called all in my head, which is a memoir about chronic migraine. And one of the things she talks about, which you’ve been talking about, was that the first time that she basically tried like a major cocktail of headache drug, two drugs together. She put on, I want, I think, over 70 pounds, and she talks about how it’s like on the one hand, the most important thing is that my headache. Improve to like, it didn’t go away, but I was so much more functional and I, I chose that. Like she didn’t, she hadn’t been warned about those side effects. But like even if she had been, she still would have chosen to reduce the headache, but at the same time, that doesn’t mean that it’s easy to have things about your body. Change, like radically,

Alicia: like, yeah,

Brianne: you got to have power that, yeah.

Alicia: My nails bed, my nail beds all shrunk and all my nails fingernails started shattering. Yeah. Yeah.

Brianne: Why is this happening?

Alicia: Yeah. Um. So, yeah, that’s, that’s my, and then I also take on top of that. So that’s kind of my cocktail I’m on. But because I gained all the weight, I then started had to layering and the drugs for dealing with the obesity.

Brianne: Okay. And well, yeah. What does that look like for you? I mean, you talked about insulin resistance earlier.

Alicia: Nine drugs.

Brianne: Okay.

Alicia: Four for being fat. Okay. Four for arthritis and an antidepressant. Okay.

Brianne: Gregory. Great bodies who know?

Alicia: Um. Yeah, so I’m on the Metformin and centroid are old. I’ve been on those for years for the insulin resistance and, and low thyroid. Um, the Staten and the blood pressure pill are new because I’ve gained so much weight in the last between steroids and sedentary menace. I’m, I am at the heaviest I’ve ever been. Um, and then. Uh, on the arthritis side, I have the unroll, the methotrexate, the leucovorin, and the unsaid. Right? Those are the four that I’m on for that. Um, one of the things that I realized is that I was using exercise as my antidepressant, and so when I stopped exercising, I was down for the count.

Brianne: And that would have been after the, um. Okay. Now I’ve, now I just lost it again, but, but now, but after the, like when you had previously been on lithium as well? Yes. Yes, yes. A significant gap

Alicia: there. Uh, like 10 years. Yeah. 10 year gap. Yeah. Okay. Um, so yeah, now I’m on nine meds and I dislike it a lot. Um, yeah. So last winter, um, I was on my flight home from school. On the red-eye from lax to Atlanta at something ridiculous, a M over Arkansas, and I had all of the feelings of a heart attack. Um. Shortness of breath, chest pain. I was cold, pale, and clammy. I was not doing okay. The lights were off, the flight attendants weren’t going up and down the aisle. I was by myself in the air in the middle of the night. In the middle of the air,

Brianne: didn’t have phones. Very scary.

Alicia: I’m not the most bright owned, the most stubborn of people, and so I bought Wi-Fi to text my husband who I knew was awake. Because he gets up very early to go to work. And I said, these are my symptoms. And he says, what is the temperature of your skin? You know, he’s asking me all that. What’s your fault? He’s texting me a di diagnosis, like diagnostic criteria and, and he goes, he says, I want you to call nine one one the moment you land.

Brianne: Okay. And he was like waiting on the plane until then feels, I guess you have limited options there, but

Alicia: nothing you can do the minute you land, you need to call nine one one. Yeah.

Brianne: That sounds very calm. I know that wasn’t the point, but like very calming to be like, okay self, just get there. Just get through it. Don’t panic.

Alicia: The thing is is that I always laugh cause it’s kind of like a money Python. I got better, I got better. Yeah. Heart attacks don’t get better. I actually started feeling better. The pressure went away. I was able to breathe. The nausea was gone. I, um, I was covered in like the stinkiest sweat you can imagine. And I felt gross, but I felt fine. I didn’t feel like I was still having a heart attack, which is not the case. I’m legit have a heart attack. So. I told my husband, I feel better. I’m going home and taking a shower.

Brianne: First things first

Alicia: is his reply was, don’t die.

Brianne: I’ve done what I can. Here.

Alicia: He was livid, livid because there were several trained paramedics, all of whom agreed that I needed to go to the ER and I proceeded to go home and take a shower.

Brianne: I’m like, I feel gross.

Alicia: That’s what it is. Like I said, not the brightest, very separate.

Brianne: No, I would have done probably about the same thing. I’ve definitely had like, nah, not like that, but like extreme health moments where I’ve been like, Oh, I’ll just call my husband who is not medically trained. By the way. And like ask him to Google some stuff for me instead of taking any kind of action of my own

Alicia: instead of actually going to the ER, like a normal person. Yeah. So it turned out I had a particular type of ventricular tachycardia. Okay. I had gone to my doctor, she put me on a three day Holter monitor, which is where you. Or hooked up to a portable EKG and you wear it around your neck for several days. Yeah. You can’t shower. You’d basically just have to like live in this little monitor

Brianne: and it’s really itchy. It was, for me at least, I definitely had an allergic reaction.

Alicia: I did too. The one that, um, that I had to wear for a month after. So, um, but the one for three days I did not. Okay. Um. They did catch a run of the ventricular tachycardia on my Holter monitor. That was over a minute long. Um, and. Was not good. I was no longer allowed to drive until they fixed it. And I was essentially shuttled straight through into a, um, a electrophysiologist who’s a cardiologist. The cardiologist joke that on one side of the room they have the plumbers and on the other side of the room they have the electricians. I was sent to the electrician.

Brianne: They’re like, heart. Rhythm specialists, I

Alicia: think. Yes. And um, I had at Midwinter, it was literally the solstice last year. I had a, um, a cardiac ablation where they, I took a nap. They went in through a catheter in my groin and zapped the. Airing nerve basically. Yeah. Uh, and, and killed the place that was going nuts. Basically what they were doing. Um, I found out I was calling it my reboot. I found out that I really did have to be AED. Rebooted, um, which is kind of crazy. Uh, but it was, Oh, you know, I relayed, found out that I had to be AED, uh, rebooted, which, um. You know, sometimes this metaphors aren’t meant to be taken, literally. Yeah.

Brianne: Yeah. I mean, I guess you were not aware of it at the time, but like still spooky, but like the classic, now I’m thinking about the paddles being rubbed together the way that they do it in like comedy, I guess about how to febrile laters work,

Alicia: right? Yeah. It’s, it’s a little, it’s a little hard to imagine. Ah. However, um, that whole experience, so I’ve, I’ve gotten the all clear. I wore a Holter monitor for a month. I have zero problems with my heart anymore. However, that whole experience of feeling like I was having a heart attack on the plane, and that whole experience with the taco karate I did make me really pay attention to the fact that I am happiest that I’ve ever been and that my weight was something that. Was really bothering me health wise. Um, and my doctors have in the past brought up weight and weight is a really hard thing to bring up because it’s hard for them because I’ve got issues around it. It’s hard for me to hear it because it’s, you know, it’s so easy to feel like you’re being dismissed

Brianne: and it is used that way. Like. Completely validly

Alicia: because there’s, yes,

Brianne: it’s a hard discussion because it can be true. Like what you’re saying, you were worried about your own actual health

Alicia: and also

Brianne: it is true that a lot of doctors will. Tell people to lose weight instead of investigating their problems. And these are both happening,

Alicia: right? And I’ve had both happen in, in the past. And, and I know that. And the, the whole shame that surrounding weight is so hard. And it’s an, you know, I, I mentioned my disordered eating as a kid. This has been something that’s been with me since I was 12 so. You know, there’s no little amount of therapy involved in this process anyway. But I really started looking into weight loss surgery and, um, as I was looking into weight loss surgery, uh, I was like, well, it’ll fix the four weight meds, but it’s not going to do anything about the arthritis. Right. And there’s was really frustrated cause I was like, so is it worth it? . So then I started, and again, I have incredibly medically literal literate. I know how to Google and I know how to read medical reports online. Yeah. So, um, this is an important piece, right? Because what I started researching were studies surrounding the effects of weight loss surgery on patients with autoimmune arthritis. Okay.

Brianne: Which is, yeah, very specific,

Alicia: very specific. However, what I learned is that. All of them had improved inflammation markers following weight loss surgery, wo reduced needs for medication. like across the board, it worked for the arthritis

Brianne: and, okay. I mean, I guess, did they, were there any kind of like hypotheses about why.

Alicia: So the interesting thing is, is that I read all of this stuff and then I could trot into my rheumatologists to go, so this is the thing I’m investigating because I want to know why too. He says, well, funny, you should ask that. He said, the reason why is that fat in and of itself is pro and feel inflammatory

Brianne: like fat cells.

Alicia: Fat cells. Hold onto. And retain and keep inflammation where that’s at. fat is intended to retain inflammation and there are some like kind of biological ways that that makes sense. If you think about like injury, if you’re, you know, a cave woman on the Plains somewhere, like you can start to think of why that makes sense, but at the same time, like. Being is that I’m not a cave woman. Um, yeah. And

Brianne: you don’t have an acute injury.

Alicia: I don’t have an acute injury. This inflammation is not useful. And so my dad is holding onto it without it being useful. Um, Pat fad is pro inflammation. If you reduce fat, you reduce inflammation.

Brianne: And I have a corollary question that may or may not make sense, but I feel like I’ve read or heard similar things about like astrogen. That cause estrogen is stored in fat cells. And so, for example, I’ve been down a lot of PCLs rabbit holes, and like that’s one of the things is that when people lose weight specifically, like all of that estrogen is released back into the bloodstream. And so there’s this, it’s an exacerbating problem basically, just because of the. The way that fat cells function. Yes.

Alicia: Hustles are our storage, their storage. And it’s not just estrogen, it’s all hormones, including inflammation markers. But it’s, um, if you think of fat as your warehouses, you know, that they’re not looking to, to Dole anything out. They want to keep it all in. And so, yeah, it absolutely. Um. Hormones, all of that. There’s a huge part of that, but the, the thing that I noticed was the inflammation piece, right? And so I kind of went down that rabbit hole of, of response and weight loss surgery, had the impact on psoriasis, on psoriatic arthritis, on rheumatoid arthritis, on like, even though just losing weight would take one pound of, of weight loss on my body would take three pounds of weight off of my ankles.

Brianne: Right.

Alicia: Just from like the mechanical perspective, but that weight loss also helps the inflammation go down. Okay. So. I started on the weight loss surgery journey and I’ve been really open about it because of the shame, because I want to dispel it because I want to talk to people about how this is what I’m going for and why. Yeah,

Brianne: yeah. Because that’s important. I want to just like strongly agree with you because of how fraud it is and how fraud it is. Like what it means to want to lose weight and what it means. Like there’s so many kind of discussions, like linking together in these moments

Alicia: and there’s so much morality tied to it, which is so frustrating because it’s like you’re lazy if you’re obese and blah, blah, blah. Like it’s all of this crazy stuff. It’s all of the stuff that, um. It’s just like you said, fraught. It’s not so much stuff that is built into it that is meant to make us feel awful about ourselves. Um, and the thing that, that for me was really telling. Um, like I said, I’ve. So I, I did learn a lot about diet. I did change a lot of my diet. My rheumatologists is absolutely 100% on board with any complimentary therapies that work for me,

Brianne: which is great.

Alicia: He says, if that works for you, go for it. Do it. Um, I do acupuncture, acupuncture, and I do, um, dietary changes. Um. The best thing I’ve ever done was a grocery store walk through with a nutritionist. I paid her for an hour. It was the most, like every nutritionist should offer this. It’s so brilliant. I paid her for an hour to walk me through, so for me to go, okay, I can’t have this, what do I have instead? . And to have her go this and here’s the recipe for it, and this is how you cook it, and here let’s find stuff for days your hands don’t work,

Brianne: which is a huge barrier to healthy food.

Alicia: Exactly. Having somebody talk me through the, what can I eat in a positive and inspiring way was. So much better than having the laundry list of the stuff that I can’t have because I now my, the things that increase my inflammation, the trigger foods that I avoid are gluten, eggs, dairy, alcohol, sugar. And nightshades.

Brianne: Yeah. Which are both all of the usual suspects, but also a lot of the things that we mostly grow up eating here in North America, like, yes, it’s everything.

Alicia: It’s in everything. And honestly, the night shades are the hardest for me because they’re vegetables. Yeah. Yeah. It feels like

Brianne: they shouldn’t be a problem. Right. And the nightshade family is so random, like it’s not foods that you would associate

Alicia: with each other.

Brianne: Yeah. Like I understand that they do in fact have something in common, but

Alicia: they don’t

Brianne: look like the same family in the grocery store. They’re not sold together or whatever.

Alicia: Right. Um, yeah. It’s tomatoes, potatoes, onions, garlic, eggplant. Yeah. That’s

Brianne: what I always think of. For some reason.

Alicia: Yeah. Potholes and bell peppers. Um, the tomatoes are actually, tomatoes and onions are the ones that like, I really, really struggle with. Yeah. Tomatoes. Yeah.

Brianne: Tomato sauce, ketchup. I mean, I know. You know,

Alicia: and how often that I order salads, you know? And then I’m having to pick the one thing that has flavor off of the salad. It’s really, a lot of

Brianne: restaurants have very depressing salads as another strong insight from doing automation.

Alicia: Yes, that’s very true. So the I, I’ve been eating very, very healthfully. I, I can eat nothing processed essentially, and, and I’ve been doing portion control and eating. Very mindfully. For years I was an endurance athlete, so the nutritionist in the six month ramp up to the weight loss surgery, the nutritionist is telling me, okay, you have to do this and it’s this many carbs and it’s this many grams and blah, blah, blah, and I realized that I didn’t have to change my habits. Which

Brianne: also as an aside, tells you a lot about the assumptions that are being made. Like the assumptions that if you are a person who is deciding to get weight loss surgery, you must not know any of this. You might not be doing any of this, like, which, Ugh. But yes. So you didn’t need to make many changes.

Alicia: I didn’t need to make hardly any changes. Yeah, I was doing just fine. And yet I am. I mean like BMI wise, I’m morbidly obese. I’m the heaviest I’ve ever been in my life, and I, and I just like, I absolutely qualify for this surgery. And yet, you know, in terms of what I’m doing on a day to day basis and my habits and my abilities, I’m, I’m doing everything right. Right. And that’s been the case for a really long time as I’ve been battling the insulin resistance and a lot of stuff. Um, but it was really kind of edifying to find that out. So to see this like postop diet and be like, okay, that’s not a big deal.

Brianne: Yeah. Because it is really specific, right. With the postdoc, like. Volume wise, probably in addition to what’s, what’s on

Alicia: the megas differences that I’ll have to take a lot of vitamins. Okay. Um, and that I can’t drink and have a meal at the same time. Those are the, I guess, differences,

Brianne: and that’s a volume thing, right? Yeah. Yeah. But

Alicia: I literally just got my surgery date today.

Brianne: Woo.

Alicia: Like it’s just gotten in the books this morning. Um, it is the Tuesday before Thanksgiving. Oh.

Brianne: That’s like, cause I’m sure that Thanksgiving when you ha, when you’re eating, like when you have dietary restriction and Thanksgiving is already its own thing. But like talk about volume.

Alicia: So I’m. One of my friends just replied when I texted her, she was like, sometimes irony isn’t funny.

Brianne: That’s just like,

Alicia: okay. The best response that I got. And this is, this is kind of going down a rabbit hole, but it’s really funny. My mother-in-law always hosts Thanksgiving and she’s amazing about it and she’s so amazing about all of my food restrictions. And literally I get a bar. I like my own plate that is like me specific with, you know, turnips instead of mashed potatoes and gluten-free gravy and like, and if they have a casserole, I get steamed veggies and I have like this little constellation of. Of dishes and ramekins around my plate of all of the things that are like are, are so that I can be a part of everything. And, um, this year my father in law for the first time in 15 years says, I really want to host you guys for Thanksgiving. You’re going to have to find a different date to meet with your mother-in-law. Cause my husband’s parents are divorced. And, uh, so I send her this text of the surgery date. And her only reply was. Good cause my Thanksgivings two days before that, they’re you good, you get

Brianne: your mashed turnips, your whatever.

Alicia: you totally feels like she won.

Brianne: That’s amazing.

Alicia: I laughed to the point of tears when I got that text. I was like, well, as long as the mother in law is happy. Right?

Brianne: Yeah. The stars have aligned here. Um, that’s incredible. What is the recovery like? Cause like by, if it’s on a Tuesday, on a Thursday, are you like going to be there? I mean, not eating everything, but like, is that a reasonable expectation for this kind of a surgery? No.

Alicia: No. Um, I probably won’t be there. Um, I. I know that there’s, um, instead of giving systemic pain relievers, they give a local anesthetic. So it’s essentially a tiny pump that has what is more or less like Novacane like what you get at the dentist that has a catheter that goes to the incision and the areas where you need the pain relief the most, and it just knows it.

Brianne: interesting a while.

Alicia: So I’m going to have this weird pain pump thing for about five days.

Brianne: Okay. So yeah. Um, through your first Thanksgiving.

Alicia: Yes. Um, then you’re on liquid diet only, like clear liquids only for a week. Then. Liquid only for a couple of weeks, and then it goes into smooshy and smooth and then it goes into, you can chew. Um, but that takes up to six weeks to do and you’ve got to like cross a lot of hurdles to do. The real fun part of all of this is that I have to go off of all of my arthritis meds.

Brianne: Yes, very good. The surgery,

Alicia: um, now. You sometimes have to go off of autoimmune disorder meds because you get a cold and you have to like go off of him for a couple of days and then to make it so you can get over the cold. Otherwise you just chronically stay sick. Right. Um, so. Um, I’ve had points in time where I’ve gotten a cold and had to go off of my meds for a couple of weeks and then gone back on. It takes me three months to ramp back up. I will be off my meds for between four and six weeks.

Brianne: Okay. So those will be for both

Alicia: immune function and healing functions because they’re afraid that I won’t heal properly if I’m on my meds.

Brianne: And can you still take ends EDS.

Alicia: No, because those irritate the stomach.

Brianne: Yes. I guess they do.

Alicia: Um, so I get no pain management. I can’t take steroids either.

Brianne: Yeah, yeah. Heat. Yeah.

Alicia: Like that’s it. I, me and my electric blanket are going to be buds, so I have no pain management for six weeks, and then I could start taking my meds again, but it’ll take three months for them to ramp up.

Brianne: Right.

Alicia: So. It’s really funny because they expect me to have these questions about, um, the, the meds or the surgery or the food, or, you know, these very specific things about the weight loss surgery. And I’m like, so let’s talk about the fact that I’m going to need that unsaid.

Brianne: Like, when can I reasonably use my medication, basically?

Alicia: Yeah. So the end said, um. I do have kind of a little bit of leeway on Mmm. Later, like, like after two, two or three weeks after the surgery. Um, and as long as I use and ed said that is easier on the stomach, which there’s only one and I had to get like an authorization to get my

Brianne: insurance to cover it. So yeah, nothing over the counter either.

Alicia: Right? No, it has to be. It’s Celebrex.

Brianne: Okay. Celebrate is the gentle and said

Alicia: it is the gentle on the stomach and said, okay, I’m the only one. And

Brianne: yeah, I mean, I remember I have a Neproxin prescription, which is still an unsaid, but the reason I got it was she was like, you need to take less Advil because if you take this much Advil, it’s going to burn a hole through your insides.

Alicia: Yeah. And so there’s an increased risk of ulcers, so they really don’t want you taking them. But at the same time. Something’s going to have to give at some point.

Brianne: Yeah. Yeah.

Alicia: Um, so I probably won’t take it daily like I do now. Um, but I will be, I will be able to start with that eventually.

Brianne: Yeah. And I’m imagining it’s going to be a very, uh, I was gonna say restful, but that’s just cause I can’t think of the right word for when you are forced to rest that restful doesn’t mean that. But

Alicia: yeah, I, um. I took off of school and I pressed pause on most of the things in my life for the rest of the year. Um. I except for work and a couple of things that I’m fiddling with at home with writing. Um, I really don’t have any commitments. I don’t have any appointments. I don’t, I don’t intend to move.

Brianne: Um, yeah, that sounds wise.

Alicia: Um. The first time that I was trapped in bed and couldn’t move, and I just was under an electric blanket and on top of an electric blanket and floating on a sea of memory foam pillows in various places. Um, I remember being frustrated with the pain because I didn’t do anything to cause it. And I remember being frustrated with the pain and being frustrated that my brain wouldn’t stop working. it was like staring at the ceiling, and all I can do is stare at the ceiling, but Oh my God, it’s so boring. And that’s real. Um, and so I know that’s coming and what I’m trying to do is I’ve got a bank of books to read. Um, being in grad school, I haven’t read a lot for pleasure, so I’ve saved all of the fun books for the next couple of weeks.

Brianne: I mean, I definitely, when I first got sick, like I had never really read romance. And now I have like almost 200 romance novels read in good reads, and it’s all audio books that I listened to on those kinds of days.

Alicia: Yeah. And audio books is going to, is going to be a thing that happens. Um, I’m, I’m not much of a television watcher. However, I could see that happening as well. Um, just binge watching. Um. I don’t, I always joke that I don’t like other people’s, uh, stories crowding my mind because I am constantly writing. Um, but that might be the, the point where I’m at. um,

Brianne: it’s immersive, like, yeah. And in a way, in a different way than reading. That’s like, I have like a hierarchy for sure, depending on how my day is. And like. For just watching TV with nothing else going on. That’s like the lowest day or that that’s tied sometimes with audio book napping of like, just take me in, take me out of his body for awhile.

Alicia: My favorite is a SMR videos for that. That’s for me. I, I’m a consumer and I’m kind of sore of ASR at this point. I have my favorites. I have, I’m not in the mood for her today. I’ll go over here. I am very picky about my AMR. I have lots of opinions. Classify

Brianne: that for a sec in case anyone’s listening that doesn’t know about it. And so AMR is, I actually don’t,

Alicia: yeah, autonomous sensory motor response. Okay. I was like, I

Brianne: know I’ve looked this up before. I definitely experience it, but I lost what it stands for.

Alicia: It’s a. Sense, a sensation of tingling that starts in the back of the head and can go down the whole body. Um, and it is, it can be done by any number of triggers. My husband’s a SMR has done by touch. Um, if I run my fingernails really lightly over his hair, he’s like, woo. Shippers doesn’t get it from. From listening to things. I have a good bit of, um, sensory processing problems, and most of them are auditory. And so as mr was a revelation for me because it never occurred to me to go seek out sounds that I liked.

Brianne: Yeah,

Alicia: I’ve spent so long. Avoiding sounds that were disruptive to my life and my brain, and that hurt and physically hurt, that the idea of finding physical

Brianne: pleasure

Alicia: from a sound was just ridiculously crazy and discovering, Oh, did the idea of finding pleasure from a sound was, it was a revelation. Like I said, it was absolutely something that you. Can’t explain unless you’ve imagine avoiding a thing forever and then suddenly, Oh, Hey, I’m going to go seek this thing out and I’m going to enjoy it. It’s a really bizarre experience. Um,

Brianne: and ASM, our videos, cause there’s like so many different ones, but they’re known for being unusual. It’ll

Alicia: be like

Brianne: a person crinkling paper very slowly or like a person running their fingers over a hairbrush

Alicia: or like.

Brianne: Whispering, just like whispering into a microphone. I think a lot of them are Swedish for some reason. Like

Alicia: there’s a whole bunch. There’s like

Brianne: tropes about this that have made their way subtly into the culture. But

Alicia: yes, there are drips. The thing that’s interesting about it is that if you watch enough of them, the thing that I really was first drawn to about them is that it’s actually, first of all, it’s pretty predominantly women doing it. And it’s a mode of expression for women, which I find really interesting. The other thing that’s really interesting about it to me is that it’s a process of experimentation. you as a listener are experimenting. Do I like the fingers on the hairbrush? Yeah. And often in the comments, you’ll find time stamps in. So if there’s a thing you don’t like, you just skip it and go to the next thing and go, Oh no, I don’t. And that’s, that’s how picky I am. I’m like, Oh no, I don’t like the lotion sound. I will go to the brushing like it’s ridiculous how, how much, I’m picky about my AMR sounding, but you’ve learned it. But I’ve learned what, what I like and what I don’t, but then there are also experimenting. Let’s see how this does. Often when they’re whispering, they’re like, I got this new thing. Let’s see what it sounds like, or, I got this new thing. I think it has neat, sticky sounds. What do you think? You know? And so there’s a lot of experimentation and back and forth that I just think is fun.

Brianne: Yeah.

Alicia: And it’s just, it’s mind numbing and soothing and like, I feel like these people are my friends when I’m having a bad day, and it is more brain dead than watching television to me

Brianne: requires,

Alicia: you are brain cells. You don’t need to

Brianne: remember anything, basically.

Alicia: Yeah. No, it requires, it requires nothing, but like, you don’t even have to keep your eyes open. You can just like let it play and have the person tapping on corkboard or whatever’s,

Brianne: yeah. It sounds magical. It’s good. You have like a sensory plan for your recovery time, which is good because like you say, the first time, you just didn’t know that it would happen and this time you know that you’re going to be hanging out a lot.

Alicia: Basically, my very sweet acupuncturist said, well, it’ll be a good chance for you to find out where you are.

Brianne: Yeah. Yeah. You get a real baseline check in

Alicia: and check in. And I, and I have to laugh because he’s a bit of a sadist, but, but it’s a good reframing as well. I hadn’t been avoiding food the last time I was, I was there. So, you know, avoiding trigger foods might make or break that, that situation, I might have some really good days plus. This is really rapid post-surgery, weight loss, all that inflammation getting released as well. So maybe it won’t be as bad as it could be. Right. But I have no idea anything could

Brianne: happen.

Alicia: Stay tuned on Twitter. We’ll find out.

Brianne: Yeah, exactly. Exactly. There will probably be off day.

Alicia: Twitter is just above a SMR in terms of how much brain function it requires.

Brianne: Oh yeah. I always feel bad on days of like, I can tweet at a like lower brain level than I can thoughtfully respond to anything. So I’m also like, sometimes I’m just tweeting garbage about. Whatever. I’ve been watching deep space nine right now, so I’m like tweeting about deep space fine, and that’s all that I’m doing. I’d be like, Oh, people are like sending me very thoughtful tweets and responses to things that I just can’t cognitively engage right now. I promise I’m not ignoring you. I’m just only up for a deep space, nine and sharing my thoughts about it that nobody cares about. Yeah. That’s the level we’re on

Alicia: today. That’s where I can give you opinions on Frankie. I cannot receive opinions on three. Yeah.

Brianne: Yeah. They’re like, I’ll save those for later. I will get back to you in three days when

Alicia: I

Brianne: like understood what we’re talking about again. But

Alicia: yeah,

Brianne: that’ll be great. The Twitter part. Um, yeah. So that brings us up to date clearly, since one of those dates is in the future.

Alicia: Yes.

Brianne: Um, is there anything about kind of chronic illness or this whole, this whole thing that we haven’t talked about that you think about a lot or that you thought about before? Before, um, today that you wanted to talk about and it’s okay if the answer is no,

Alicia: I don’t know. Um, it’s funny. Uh, my friends at Webb and D asked me to talk about the grief of letting go of the different pieces of self. Um. You know, like I said, I was a backpacker and a hiker and a runner, and all of these things that I am not, and I probably won’t be ever again. Um, and I declined talking about the grief with ’em. Um, mostly because I don’t think I have anything useful to say about it except for that it’s there. Yeah. Um. You know, everybody’s got a different journey and it’s so hard to not be believed or to have symptoms put off as depression or as obesity or whatever. Um, some of the books that I’ve read that have been really, really helpful for me have, have actually been about psychosomatic. Impacts of real physical illnesses, um, including when the body says no, and the body keeps the score, which is specifically around trauma and around, um, boundaries and around like addiction and stuff like that, where having stuff happening in your family will actually impact how your body treats itself. And I found those incredibly useful. Um. In some ways, because I, I’m the kind of person that wants to control it. I want, I want to have a cause and effect. Um, I will deliberately eat triggers because the next day I will hurt because then I’m in control of it.

Brianne: You’re like, I chose this.

Alicia: It helps me to choose to choose to do those things and to have that control even if it’s to choose pain. Um, I. Dislike it when I’m not able to choose. So rain is one of my big triggers and I have no control over rain, right. And there are days when, um, when, even when it’s sunny outside and even when I’ve eaten properly and everything is hunky Dory and I’m not stressed. And you know, all of that, doing

Brianne: everything right.

Alicia: As my husband says, sometimes your role, Oh one is a D and D gamer and he’s, sometimes you just roll the one and there are days where you just roll a one and you can’t control it and there isn’t a cause and effect. And you didn’t do anything.

Brianne: No.

Alicia: And there is a level of acceptance of that and that. Comes with the grief. It comes after some of the grief and that comes with accepting the reality of being chronically ill that well, people don’t understand and they don’t understand the concept of me saying, I’m going to be dealing with this forever. and me saying. Mmm. I’m making the choices that I need to make to accept this. And they see acceptance as giving up when it’s the opposite. Giving up is giving up. Acceptance is understanding real reality. Yeah. And, and being able to understand what choices I do have and what choices I don’t have, and making good decisions from there. You know, like the, the wheelchair in the airport.

Brianne: Yeah.

Alicia: Um, I have the option of tipping a guy to wheel me through Atlanta airport. Um, and. You know, being treated like luggage through the Atlanta airport, which is really not fun. Um, but it can really, really help. And it can mean that on the other side, when I land in lax and I’m there with my friends and we’re going to go out to dinner that night, I actually have energy to go out to dinner with them.

Brianne: You get to make that choice.

Alicia: And it’s an acceptance of being able to accept. It means that I can manage it and I can choose it. It’s all about being able to have that agency and that autonomy and I, I wish that within the chronic illness cone man community, there was more conversation about how acceptance is of reality and just kind of. It’s not resignation. It’s not like I’m just going to be E or forever. It’s, it’s, it’s no, this is my reality and I’m going to adapt to it.

Brianne: Yeah. And make choices that like support my overall wellbeing, which looked different than that. Looked in the before times.

Alicia: Yes. And, and it’s really funny, my husband and I just had a thing. Like not wasn’t an argument, but it was almost an argument the other day. Um, where he is sad. I just assume you’re going to be miserable when I get home.

Brianne: Yeah.

Alicia: He was like, I know it’s raining. I just assume you’re going to be in pain and you’re going to be miserable. and I was like, well, stop looking at me through pain lenses. Because the pain is, it’s there. Yeah. It’s raining today and I’m hurting today. I’m at a good solid four today. But, um, but it’s not a five. I’m not gonna walk the dog.

Brianne: Yeah. Choices.

Alicia: I’m gonna make different choices. I’m, I’m not going to eat some cheese, even though it sounds amazing, but I’m. I’m going to make different choices to take care of myself and to ensure that I feel better about, you know, everything. And so it’s, it’s like. I’m actually making a lot of decisions now that are surrounding my self care and my fulfillment and my happiness, and that have nothing to do with the pain. Right. And, and I think that that level of acceptance is hard for people to understand.

Brianne: Definitely. And I think one thing that really even struck me at the beginning of this, about. Grief and how it plays into it is when you do try to talk about this a lot of the time, the first thing that people want to do, so even with your example, right? Like I used to backpack, I used to be like an endurance athlete. People’s first instinct is often to be like suggest adaptations immediately because what they’re hearing is that like being able to say that you do these things is important. Almost like the value is in. That they’re a part of your identity, which is certainly true, I think in my experience. Yeah. But like, like when I was a teenager, when I was a kid, like I was a summer camp kid, I did a lot of long canoe trips, like back country canoe trips, and I loved them. And with my body now, I would be miserable sleeping on a thermarest on the ground. I’m not going to do things that involve that. And so while that was a big part of who I was at that time, like. I miss being that person more than I miss doing that thing. Yep. And so it’s, it’s like, and so I feel like this relates kind of to to when you’re in partnership with a person who’s healthier say, or family members or friends or whatever who are trying to support and what they’re perceiving as misery or unhappiness or whatever is, it’s like it, not to say that it’s not there. And not to say that those feelings aren’t totally valid, but it’s like. You’re trying to imagine the pieces of my experience that you can maybe imagine like you’re trying to imagine the pain or you’re trying to imagine the triggers are or whatever, but you haven’t been through this like grief and the processing and acceptance. So what you’re imagining isn’t related to what I’m feeling. Like it’s the same as that thing of like, I miss being that person not doing that thing.

Alicia: I, um. I did an exercise for myself that actually ended up being more useful for my husband. Um, in my journal, I did an exercise of all of the things that are the pieces and components of my identity, who I was in my identity. Um, and I tried to make it not about my relationship to anybody in my world. You know, not step-mom, not wife, like not that stuff. Um, but literally the, the things that I verb are the things that adjective about me are the nouns that I am. Um, all of the things that I thought of as myself in, in my full identity, in my fullness of who I am. And I listed this whole big, big, big, big, big list. And the pieces of it that were related to the chronic illness made up 1.7%. that list and the pieces of it that I had to let go were maybe three or 4% of that list,

Brianne: which isn’t nothing should be

Alicia: clear. It’s not nothing. Yeah. It was really useful for my husband to see that pie chart. Yeah. I’m still here. Yeah. This is what I’m letting go. Yeah. The illness. I’m still in the rest of this pie chart.

Brianne: Yeah. Yeah. Like I’m still a writer. I still like to read this kind of stuff. Whatever it is, like, yeah. Yeah. That’s

Alicia: powerful. It was hugely powerful and it was helpful for me because he was worried I was going to identify as a patient of this disease and like identify with the disease and like go down this rabbit hole of, you know, like victim hood and murdered them or whatever, and instead I was like, this is reality. Yeah. It’s a tiny part of it. Of course. It’s part of my day to day reality. I make food choices based on it, which is,

Brianne: it takes up a lot of time and energy.

Alicia: Um, I make, I make day to day choices based on this, but at the same time. Um, like he’s applying for a fellowship that might move us across the country. And I’m like, all right, let’s go. I can work anywhere.

Brianne: Yeah. This is also still true.

Alicia: You know, I just might have to hire movers instead of getting a new hole. Right. Um, it’s, you figure out ways around it. And so, yeah, it was really helpful for me to, to realize that my identity wasn’t. Shattered by illness. That there were just pieces that I was going to have to let go. Yeah. And honestly, I don’t think I have to let go the running or the biking. I think I can get back there, especially after the weight loss. Um, with the lower back injury and the lower back arthritis, I do have to, to Slack pack, or I’ve been bugging my husband to get me a donkey. I’m like, I just need a donkey. He can. He can carry my pack. Yeah, exactly. I need a tiny miniature donkey to carry my backpack, and he’s like, no, we live in the city. Stop that. But

Brianne: they’re like, well, we can stable it somewhere. It’s fine.

Alicia: Like, this is my workaround. I just need a donkey.

Brianne: A sustainable.

Alicia: What about a big dog

Brianne: that’s next.

Alicia: And so, I mean, it’s just, I joke, but, but I’ve been hiking since I’ve gotten sick and I just turned around a lot earlier.

Brianne: Yeah. Again, you make different choices.

Alicia: Yeah. And canes. I learned don’t. So I did carry a cane. The reason I care cane is because of the stabbing pain sometimes makes my foot stop working. Um, but what I learned was that I was taking it too easy on my back and not using enough of my core muscles with the cane, and it was harming me rather than helping me. So I stopped carrying it. Um, I do still use it like as a hiking pole, basically biking. But, um, I overall stopped using them completely because it’s just, it’s better for me pain-wise not to. Right. Um, but it is really fun cause my husband got me one with a sword in it.

Brianne: That’s great. My husband owns one of those and he does not use a cane just as an aside as well.

Alicia: Yeah, I use this a cane and I’m a varsity fencer.

Brianne: Yeah. Yeah. Also, he’s not ready. It’s very practical for you.

Alicia: So he has a cane with a sword in it. Is it like an operable sword or is it like,

Brianne: I don’t know. We in our house have like three to four swords and I don’t, I couldn’t tell you why. Like one of them was. My great aunt, my great uncles, and my dad owned it and then like three of them are my husband’s because when he used to go to some cabin in Maine with his friends, there was someone with like a dubious hobby, weapons trailer nearby, and I think just every year he bought a new one, like the one that is a cane has a, has a like a magic eight ball handle. I think maybe I’m imagining that I’m not clear on how functional it is.

Alicia: Oh, mine’s incredibly functional. Um, it’s by far my best cane and usability as a cane, and this is my best cane. Um, and then also it has a highly functional sword. Within, it sounds

Brianne: great.

Alicia: I just need to get my concealed carry before I can take it on the train here in Georgia. So

Brianne: yeah, I suppose it is a weapon.

Alicia: It is a weapon

Brianne: far as these things go.

Alicia: Yes. It’s very nerdy, very nerdy. But um,

Brianne: clearly I’m in no place to say anything about that.

Alicia: But yeah, that was how he wanted to encourage me to use the cane cause you got me that.

Brianne: Yeah. That’s wonderful.

Alicia: It sounds like your husband’s super supportive.

Brianne: Yeah. Yeah. And this is like, it’s an interesting thing as far on these conversations, cause so many people that I talk to are like, relationship is such a big part of it either as being in a relationship or having lost relationships or being single and worried about dating and like I, yeah, I would say I have certainly been very lucky. He works from home, so he’s here all day and he. As a person. This is probably both good and bad, right? As a person, he is pretty quiet and he’s like a quiet coper, so he’s very willing to just like put his head down and help out whenever necessary and process later, which is good and bad, I think sometimes. Um, but it’s, yeah, it’s been really wonderful because he’s not someone who will turn around and be like, well, you just need to push yourself harder. If you. You know, and yeah, people do experience that. I know that they do. Partners have that reaction of like, Oh, you don’t think that you can cook dinner tonight? Like, you’re just not trying hard enough. Um, I am very grateful to have not also had to manage that because it’s. You know, you don’t, I think most, most of us have like enough negative self talk that having the person that you live with and maybe you wake up to every single morning if they are also like sending those messages to you all the time. Like there’s some stuff that you do need to hear and there’s some stuff that you definitely do not need to hear. Right?

Alicia: Yeah. Yeah. It’s, it’s huge. Um. Our marriage got better when I got sick, which is so weird to say, but so much of it had to do with me being, believing that I could be loved even if I didn’t do everything. Um, was such a huge part of it for us. And so back to the days when I was floating on a sea of memory foam and couldn’t move. Suddenly he was doing everything. Yeah. And I was still loved and it was, it was mind blowing. Like it was like, Oh, wait a minute, this is. This is not what I expected. I was having an existential despair that I was going to cease to exist because I wasn’t performing, you know, giving acts to the whole world and

Brianne: yeah, like I, I let down the transactional bargain that we made and I have no longer been meeting, like fulfilling my end of it. And that means that you’re going to terminate this relationship immediately. Again, not. I’m being glib about it, and that does absolutely happen,

Alicia: happens, but when it doesn’t, yeah. It’s like you said, like it’s so grateful, so grateful that all of that is there and it made our relationship so much richer. Um, uh, we’re still navigating it though. We’re still navigating, cause like I said, he sees me through pain glasses. He just assumes I’m always hurting and I’m like, I have good days and bad days.

Brianne: Yeah.

Alicia: Yeah. And

Brianne: it’s like, if it’s, I feel like there’s like a communication element too, because the flip side of that, so I have neuropathy, I have nerve pain and like it fluctuates kind of wildly. And like. If I don’t talk about it for awhile, and he’s really good about this. He’s not at the like removed family level where he assumes everything’s fine if I don’t talk about it. But with some of the pain specifically, he’ll be like, Oh, you haven’t had that for awhile cause you haven’t been talking about. I’ll be like, Oh, it’s happening right now. It’s just at a two. He’s like, okay, I need you to tell me still like, apparently you have been having pain this whole time and you didn’t tell me like, that’s not what’s happening here.

Alicia: Well, and there’s the whole, like, you get sick of talking about it. I just don’t want to have that conversation every freaking day.

Brianne: Yeah. I want to talk about it if it’s novel, so if it’s new or if it’s higher than average. And I want to talk about it when I’m tracking it. So if I have a doctor’s appointment coming up and I want to make sure that I have a good sense of frequency, then I want to talk about it, but like this stuff that’s baseline stuff, it’s just – that’s what it is now. That’s my baseline.

Alicia: That’s today. Today is this baseline of “I’m hurting”. And so, you know, when he comes home and he goes, how was your day? I’m not going to be like, it was a four, cause that was a four. Like I’m gonna be like, oh I was in this podcast! Like yeah, talking about what happened in my day.

Brianne: And I say this all the time, but it’s like, it’s not the most interesting thing about me. It’s not the most interesting thing about my day – unless sometimes it is. But when it’s not, I don’t need to talk about it.

Alicia: Yes, exactly. Yeah, exactly. It’s not the most interesting thing thing about me. No, that, like, goes back to that identity pie chart. It is 1.7%.

Brianne: Yeah. It takes up a lot of load, I’m not saying that it doesn’t – or like a lot of space – and of course I now have chosen to be immersed in other people’s chronic illness stories, but that’s actually not the same. And for me, before I got sick, I like ran a storytelling event. So if I made a pie chart, stories would have been a big part of it before. And they’re a big part of it now. But now there’s like an asterisk that says that they’re about chronic illness.

Alicia: What are they about? What are the stories about instead? Yeah, exactly. Yeah. It’s a very strange, that’s not the most important thing. And so I just don’t talk about it most of the time. A lot of times people start catching my nonverbals. So like, right now I’m massaging my hand and sometimes people will catch that I’m doing that and they’ll be like, Oh, you’re in pain. I wont even notice that I’m doing it. And, but my friends will start to catch that instead of asking me. They’ll just be like, Oh, okay. Do we need to slow down?

Brianne: Yeah. Like, what can we do to, you know, accommodate or change around this, which is great. It’s like having a low drama kind of change of pace or whatever is awesome compared to “time to stop right now because I’m in pain and everyone needs to know” and I need to like…That’s sometimes what it feels like, and it’s like, I don’t want to do that.

Alicia: Right. I just want to walk a little slower. Yeah.

Brianne: I’ll just change tacks a little.

Alicia: Yeah. My friends at grad school tend to be the most attuned to it just because we do spend such a concentrated amount of time together. They’re really attuned to it, and we’ll be like, do you need me to get your plate? Like they’re just, they’re like kind of sly about it.

Brianne: Which is lovely.

Alicia: Yeah. It is lovely. It’s lovely because we all take care of each other. Our age range is ranged from 28 to 73, or 74. And the eldest of us is also legally blind and has a service dog. And so frequently there are – and there’s more than one of us with pain – and so, one of the woman has cerebral palsy. Like there’s just like this amazing mix of people in this group. And so whoever’s feeling the best takes care of whoever’s not feeling the best. And that ebbs and flows and changes every day because we all have days where we roll ones or we all have days when we’re doing great. And it’s really interesting being in a group that is that cohesive of people who have various things happening in their lives.

Brianne: Stuff that they’re managing,

Alicia: That everybody is managing something. And we’re all so open about it It’s really this amazing give and take in a social setting that you don’t realize happens. And it would almost be easier if we had more open communication. Like if there was less stigma, if we could just say, “This is what I’m dealing with right now. What are you dealing with right now? Let’s just work together.”

Brianne: Yeah. And not that every conversation needs to be practical because there’s a piece of that, but sometimes, if it’s like, if we can talk about those practically without the emotional load of it, like I don’t need you to say you’re sorry. I don’t need you to ask about it. Let’s just like. Take it in stride.

Alicia: Yes. Exactly Wait, you see here?

Brianne: Yeah. Yeah.

Alicia: That’s a thing.

Brianne: Okay. That’s a lot of things actually.

Alicia: That’s like the social change element.

Brianne: Yeah. Yeah. Yeah. There’s a lot of work there that can be done, hopefully, soon.

Alicia: But yeah, chronic illness is a heck of a place to do storytelling.

Brianne: Yeah. Yeah. It’s, I mean, I used to, so my event that I used to run was called Stories We Don’t Tell, and it was anything that fell into that category. So, you know, people would come in with like all kinds of tough stuff that they’d never talked about before and like go through the workshop process. So a thing that I have learned about myself is that I’m like very squeamish and I don’t think I’d be a good therapist at all. But listening to people talk about tough things doesn’t phase me the way that I know that it phases a lot of other people. So I’m like, Oh, I don’t actually mind showing up and having a conversation about whatever it is. And again, I don’t think I’d make a good therapist, but talking about it practically and narratively and pulling those lines through. I was like, okay, I guess I’m going to learn a lot about health now.

Alicia: Yeah, no, that makes total sense. Do you find that there are themes that come out with your podcast?

Brianne: I think the grief and acceptance one is a big one. There’s also stages, right? So it has amazed me – the early stages, you first started to get sick. You wonder if you brought this on yourself. You wonder if you’re imagining it. You wonder if you’re making it up and for different people this lasts different amount of times, of course. But I like, you know, sometimes I do this stuff on Twitter. I’m sure you’ve seen sometimes people’s answers. It’s like 20 years of kind of wondering. That is so universal. I didn’t expect that to be so universal. Like I knew that I felt that way. And I don’t think even some people who I’ve interviewed or people that I’ve known for years, and I didn’t know that they had felt that way. Like it’s really under communicated and underrepresented. And then I think a lot of this stuff about relationships, so not just romantic relationships, but like how family all of a sudden wants to give you lots of tips. How friends often kind of vanish because they don’t know how to show up for you. Like, I mean, I’m sure some friends are just kind of shitty friends, but I think a lot of them are really, really overwhelmed and like just have no idea how to be compassionate or how to empathize. And I think that’s paralyzing. And so people talk about different pieces of how that felt a lot. That comes up a lot. Similar to the romantic stuff, but the adjustment of – what does it actually mean to accept it? And here’s how I have to live my life now and here’s how I have to really kind of aggressively defend that space. Cause that’s a tough one too. It’s like you can do this work by yourself and then you have to have this, you don’t have to, but you probably find yourself having this conversation with other people over and over again because this is -you said this – people think that when you’re accepting it, that means you’re giving up. You have to, again, you don’t have to, but you may find yourself defending that decision of like, I’m not giving up, but I’m telling you that in order to feel good, I need to do these things. I’m not rigid and not necessarily a control freak. Like, I have paid attention and I have learned. And if you can’t respect that, all of a sudden boundaries start to look really different. So, a lot of it’s like a lot of this kind of social stuff. And another thing that I really didn’t expect to actually…So I grew up with a really, like, I’ve always had weird health problems and they were never, like, very much helped by my doctor. So I also, I did my first elimination diet in high school probably, definitely before I went away to college. So like, that’s always been kind of normal thing to me to like fiddle around and see what levers you can pull on your own. And like, there was never a time when I’ve ever been prescribed anything. Even some medication is kind of outside of the realm because my stuff was always so weird…Just like, Oh, you have phlegm all the time. Oh, you have a chronic runny nose, you’ve chronic neck pain, whatever. And I was like, Oh, I’m going to start talking to people with chronic illnesses and I’m going to find out what are all the weird hacks that people have found for their own bodies because most people have, right. Or have tried, right? But I thought that that would be like the kind of thing that would stand out the most. And that’s turned out to be like the smallest part of it. Where like even people who have found lifestyle adjustments that work kind of gloss over them cause they don’t feel important anymore. And like I spent so much time and energy on stuff like that for years that was really important to me at the time when I started. And so a lot of the times it’s like figuring out how to let go of really rigid rules that you think will make you better is something that comes up a lot. And it’s not that they don’t help, sometimes they do help. But like, I dunno, navigating that world, there’s like being gas lit by your doctor when you first show up and think something’s wrong and they say you’re depressed or that nothing’s wrong. But then also like, going on Instagram and openly talking about your experience, if that’s something that you do, and all of a sudden, like everyone in your community is drinking celery juice and you’re like, well, do I have to drink celery juice every morning? If I don’t do it? Does it mean that I don’t want to get better? If I do do it and it makes it something different, am I doing something wrong? Like there’s this whole other thing. So that was a really long monologue that I had in answer to your question.

Alicia: No, I really appreciate it. It’s interesting about the life hack idea, the what can you do? And you’re like, that’s going to be the thing that people talk about.

Brianne: And I didn’t think it would be universal. Like I thought it would be a whole bunch of individual stories of how people kind of – this isn’t the words that I would have used and or would necessarily use now – but optimized wellness for their circumstance. And that is what this is about. But it turns out that that work is much more emotional than it is dietary.

Alicia: Yeah, it’s definitely much more emotional than dietary. The other thing is that one of the things that I did that was kind of, it was kind of goofy, but it was actually really helpful – Right when I got diagnosed and realized that this was a thing that I was going to deal with, I made an Amazon wishlist that was just assistive devices. And sent it to Facebook and just was like, if you want to give me anything, these are things that would help me. And it was like that electric blanket, the various memory foam pillows. It was that kind of stuff. A squeezer for the can opening and stuff like that. And it was empty and purchased within 24 hours, which is a great way to help keep the people who want to be compassionate and give them ideas.

Brianne: Here’s where you can direct that energy.

Alicia: Exactly. Because they can buy you fuzzy socks and tea, which is great. Which was really, really, really kind, but it was also really helpful because then it gave us something to talk about. And it was a really – I have to say, as far as life hacks go, assistive devices have been a big part of my life. The little stool in the shower and the things that feel like I’m giving up, but at the same time make my life easier. Um, also, there’s a lot of technology that feels like hipster technology, but is an assistive device like Instacart. Instacart is wonderful and I love it. Or my Roomba.

Brianne: Yeah. Yeah. Luxuries that are….That’s also what can be interesting with universal design, which sometimes gets things really wrong, but sometimes like you designed a product that really makes disabled people’s lives easier and other people want cause it’s convenient.

Alicia: Like cause it’s convenient and helpful. Yeah. No, my husband got me the Roomba because I was like, the thing that hurts the most is standing up. So sweeping the floors are really hard and he’s like, okay. He’s a fix it guy. If he can fix it, he will. And so, I can’t tell you how many times he’s tried to buy me robots for around the house.

Brianne: Can a robot solve this problem? I’m also like, I’m like a really like frugal person. To the point that it’s not helpful. So sometimes, like, I just got heated socks, but I’d been thinking about getting heated socks for like a year. And eventually I asked my husband, I was like, can you please just figure out what the best heated socks are and then buy them for me cause I’m paralyzed by my decision making metrics. And he’s like, I went on Amazon, I searched for heated socks, I bought the one with the highest review and it took me 10 minutes. I’m like, well, I’ve been thinking about this for eight months, so I’m glad that you’re here because I would’ve never bought them. But I love them.

Alicia: I didn’t know heated socks were a thing and I’m purchasing some as soon as we hang up.

Brianne: Oh yeah. They’re like, they heat the top of your feet, but I wear Uggs instead of slippers because my feet are so cold all the time. So like with heat source and then insulation, it’s a really good package because my feet don’t are not a heat source. So putting them in Uggs by themselves, it’s just like cold feet in Uggs like it’s not better.

Alicia: You want to get warm and stay warm with arthritis and so slippers and layers and turning up the heat – I’m all in. And dry heat, like electric blankets, that kind of stuff is where I’m at my best. That’s the most helpful for me. Good.

Brianne: I love to be warm. I need to go get the batteries for my socks actually, because they are off right now. Now that I’m talking about them, I’m realizing my feet are cold.

Alicia: Oh,

Brianne: hey body. Huh. That’s another thing I say about these interviews is I like, I get really engaged and I totally pull out of my body and then as soon as I disconnect, I’m like, Oh, that’s what’s happening right now. Okay. Time to do some damage control.

Alicia: Totally understand.

Brianne: Well, thank you so much for talking to me, and we’ve had like a good solid chat, so we covered…everything. I think

Alicia: Everything, just top down.

Brianne: Yeah.

Alicia: Awesome. Thank you so much.

[guitar riff]

Thank you for listening to episode 56 of No End In Sight!

You can find Alicia on twitter @A_K_Anderson and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod.

Plus, don’t forget to check out the new No End In Sight collection on Medium where you’ll find stories and essays about life with chronic illness. You can find that at medium.com/no-end-in-sight.

As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.

And finally:

This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com