Chronically Living and how to make the most of it

Flash From the Past: Psoriatic Arthritis with special guest Katie James

June 07, 2021 Kelsey, Katie James Season 1 Episode 50
Chronically Living and how to make the most of it
Flash From the Past: Psoriatic Arthritis with special guest Katie James
Show Notes Transcript

In this Flash from the Past episode, a between seasons re-release of Episode 3, my friend Katie James shares her journey with psoriatic arthritis, and how she got to a place where she's living an amazing life, despite flare-ups from her illness. 
In this episode we talk about:

  • Her diagnostic journey
  • how it's affected her health and mental health
  • what she's doing now to live an amazing life
  • how determination, and a passion for creativity have helped her.

Follow Katie's artwork on Instagram @iamkatiejames

To sign up for Discover Somatics in 30 Days from Move Deeply Wellness (and get 20% off the course) visit www.movedeeply.com/discover and use the promo code: HEAL

New episodes of Chronically Living will return June 28.

Kelsey Harris:

Have you recently been diagnosed with psoriatic arthritis or another similar autoimmune disease? Are you thinking that your life has hit a roadblock? And you have no idea if you can or how you can overcome it? Or is it your loved one that's in this position? Either way, you're not alone. In this flash from the past episode, one of the first on the podcast actually, Katie James, and industry leader in UX content design shares her journey with psoriatic arthritis, and how an open mind a passion for creativity and termination have kept her going for the past decade. Let's check it out. I'm Kelsey Harris, a chronic illness warrior and a psychotherapist in training on chronically living and how to make the most of it, we're providing tangible ways to improve the well being of spoonies. So get ready to make the most out of your life, even with that pesky chronic illness. Alright, so today's guest and my first guest ever is my dear friend, Katie, James. Katie is the UX writing lead at Uber and amazing visual artist and a rheumatoid arthritis warrior. So welcome to the show, Katie, and thank you for being my first guest. Thanks for having me. No problem. Um, so as I mentioned, and as you're going to talk about, you have rheumatoid arthritis. So I was wondering if you could just kind of start off by telling us some of the events that led up to your diagnosis.

Katie James:

So I will start with a small clarification because we started in an RA capacity. This was way back, but I'll get into it. I actually was diagnosed with psoriasis. arthritis. Okay. Oh, it's the psoriasis arthritis combo, which is a joy. I'm sure many of your listeners will appreciate one or two of those funfilled autoimmune disorders. And yeah, I guess my story. So for context, I'm currently 33. This started for me back when I was about 2322 23. So it's been about a decade now. At first, I started having inflammation in my right hand. So I am right handed, in my right hand, thumb joint, I woke up one morning, and it basically ballooned out to like twice the size.

Kelsey Harris:

Yikes.

Katie James:

Andyou know, I'm not overly manual other than I draw, I was doing a minor in art, I was studying at university at the time when this flared up for me, but, you know, the first thing that comes to mind back then is Oh, it must be carpal tunnel, maybe I've just been writing too hard, you know, my hand is stiff. So you go to a walk in clinic and they give you an anti inflammatory pill, or they just tell you to take Advil or Tylenol, you know, come back, just put some ice on it, you know, the the standard plastic, the classic what they give everyone. And, you know, I found it was just extremely painful. Like it got to the point where I couldn't make a fist with my hand, I couldn't hold a pencil correctly. So you know, I wasn't doing any artwork at that time. It couldn't take notes by hand. But even just simple things that you don't quite realize and take for granted, like brushing your hair. Right? Right, like not having that dexterity and actually being able to grab something, and sort of function on a very superficial level was quite frustrating. So I went through a series of doctors because I kept going back to complain about the same thing. Until one morning, I woke up and I got out of bed and fell over because pressure that I put on my feet had me crumbling and pain. And then I realized that my toe joints had like ballooned out like I felt like I had broken them in my sleep. Very strange. You know, like, again, like these things are just, they've never happened to me before. So I couldn't quite identify any of them. Right. And so I kept getting passed around through sort of this cycle of doctors through my, my walking clinic or the university doctors rather. And finally, I was referred to a rheumatologist. They basically just punted me over to her because whatever mystery was happening, that didn't seem to be getting better. And I had tried all of the anti inflammatory pills. At that point, I think I also had corticosteroids injected directly into my joints for a while. For anyone who's been through that it's extremely painful. It's like the big needle, right? And when you watch that go, like right into, you know, depending on where you join is I had it in my hip, I had it in my shoulder, I had it in my hand. And then you do your research and realize that it's not healthy. Right, you know, athletes see that like the degenerative effects to joints and tissues quite dangerous, so I wasn't super comfortable having that done all that regularly.

Kelsey Harris:

Make sense.

Katie James:

You know, and like anyone who's advocating for them Felt like can we find a somewhat natural remedy? Like I don't want to be pumped full of drugs, you know, I'm 23 and so on. Some of the drugs are quite scary. You know, I was on this medication called methotrexate, which was developed in the 50s primarily for cancer, it was a chemotherapy, and it wipes your immune system. And it comes with all kinds of side effects. It has hair loss, you know, kind of like traditional chemo type side effects, and you're like, Is it worth it? Right? I mean, like, my joints are achy, and I can't bend my hand, but like, do I want to be on this cancer drug?

Kelsey Harris:

Yeah, that's scary.

Katie James:

It's terrifying. So I took that for years. Anyway, so I was finally referred to a rheumatologist downtown Toronto, Dr. Campbell, she is an absolute saint. I think she changed my life because where I was mostly dismissed, and arthritis didn't even really come to mind for anyone. She really took the time to dig into every possible scenario, we did a whole gamut of tests and like, I am all for the power of, of medicine, but I've also the power of let's have every test done under the sun, right? I don't want to be your experiment. I don't you know, I understand the business and the pharmaceutical industries. And so I know the logistics of money making and why we why we push certain drugs and not others, but you know, to sit in her waiting room, I was the youngest patient by about 40 years or so.

Kelsey Harris:

I feel like when I go to see my rheumatologist I'm like, why is everybody else so much older?

Katie James:

And you know, it was a joke to me back then. And I'm like, haha, here I am sitting in this waiting room with you know, eight year olds and like, I'm just I'm seeing their pain, right. And you know, a lot of them were using their their doctor's visits as sort of social visits. onwards, I'm just like a get in get out type of person, but the care that she gave me and so we went through all the tests, we had x rays, ultrasounds, MRIs done, we had all the bloodwork, she just wanted to cover her base, but she could see that she's like, this is very unfortunate. I don't want to see a 23 year old, hobbling around in pain, right, where you know, the 80 year old across from me had better mobility than I did when I went to see her. That's scary, which is terrifying. Yeah. You know, a little sobering. So finally, she had recommended that I be put on this new it was new back then it's not new now. But this new drug called Humira. And it's a biologic agent that binds to specific cells, the cells that are responsible for inflammation. Basically, in a nutshell, it's like whatever your immune system responses, like, if I stub my toe, and it gets inflamed, that's a normal response in the body. But for anyone who has sort of an overactive or an autoimmune disorder, it's like your cells are fighting themselves, right? Like, like, everything's just misfiring. Nothing's, nothing's wrong, and yet, I just feel inflammation all over. And so what this drug does, you inject it, and it goes to work sort of attacking the cells. And it's another type of drug that wipes your immune system. So it also comes with very serious risks. It puts you at a very high rate of contracting viruses, bacteria, infections, tuberculosis, you know, right now we are July in 2020. We're right smack in the middle of a pandemic for COVID-19. And I you know, I'm not ignorant to the fact that when I take a Humira injection, my immune systems wiped to nothing.

Kelsey Harris:

Right? Does that make you nervous with COVID-19?

Katie James:

Like, have you felt it absolutely does and I just had to make a decision to travel recently, I was packing up an apartment in San Francisco, so I traveled from Toronto to San Francisco through two airports twice, right, while just having taken a Humira injection. And I think anyone who can appreciate when you have flare ups of pain you do you you may or may not have to make a mental trade off of like, Oh no, when should I take this drug? Right? Like if I have a drug at my disposal, and that actually helps my illness? I will take it but here in the middle of a pandemic, I'm I'm grappling with this if I take Humira I'm at a higher risk of contracting COVID

Kelsey Harris:

right.

Katie James:

So which is worse right and it's a horrible mind space or headspace rather to be in like the anxiety that comes along with this and you never know when flare ups are going to happen and you can sort of mitigate them and keep them at risk with your or keep them at bay with your medication but I'm trying to you know, keep myself safe. I'm trying to keep my partner safe and so the anxiety doesn't make it any better because we know anxiety triggers all kinds of health.

Kelsey Harris:

Exactly.

Katie James:

Situations on their own. So yeah, like I've been battling this for the better part of a decade. The I love Humira. I will say I'd like the poster child of that drug because I had been battling both psoriasis and really bad flare ups of arthritis for a while and the first injection I took of Humira wiped it all right, you It was that powerful. And it was like years years of like psoriasis. And I didn't have, I didn't have that bad when I think of others because I do know a handful of people. And like when it's when it's something visible, you have that vanity lens as well, right? If you see plaque psoriasis, and someone who just has scaly skin, and it's itchy, and it's red, and it's inflamed, you know, for the most part mines contain to the words the back of my skull, so my hair covers it. And so nobody, nobody notices. And so I have been very fortunate in that I noticed because you can feel it. And it's like uncomfortable. And when you can start to feel sort of like a skin type build up as gross as that sounds, that's basically what it is your skin cells are just producing faster than normal. But when I can start to feel that I kind of know that the arthritis is going to come with it. It's like thunder and lightning when you hear thunder, you know, lightnings coming and that's how I basically equate, okay, monitoring these two, um, like, if my joints start to feel stiff, I get all paranoid about how my skin's doing. Right, they do come together.

Kelsey Harris:

Make sense.

Katie James:

And so you know, I love Humira and the poster child for here, it is very expensive. So if you are not fortunate to have a health, or an employer sponsored health insurance plan for two needles, which is the general prescription, it's about one needle every two weeks, is where you will start on this prescription. It's 18 $100 for a box. Oh, so to pay that out of pocket, and I have when I've been in between jobs, or I haven't had insurance to pay that out of pocket as a huge hit.

Kelsey Harris:

Yeah, that's Unfortunately, that's very common with chronic illnesses. The medications are so expensive. Yeah, you basically have to hope you have some kind of insurance or some way to pay for it. Which sucks.

Katie James:

Absolutely. And when I started and when my doctor prescribed me on this drug, I, I didn't have health insurance, then I had just started a contract job. I think I was an executive assistant way back when 10 years, a lot has changed for me in 10 years. But she actually took the initiative to fill out the government paperwork to have it be partially if not all government sponsored. So in Ontario, here in Canada, it's called Trillium petroleum benefit. And she went ahead and just filled out those forms on my behalf because she's like, I need to get you access to this drug, they deliberately make it very difficult. They want to push the cheaper drugs, methotrexate being one of those, right, because the companies make more money. And like she was so transparent and honest with me about the sort of behind the scenes of the drug companies and why they, you know, they'll drop off a whole bunch of sample boxes to the doctors, because they want those doctors to then push them to their patients. And it was the first time that a doctor had ever been that real with me. And so I have stuck with her through all these years. She's getting out there in age that, you know, it's my worst fear that she retires. Right? And then I get passed to somebody else who doesn't take me seriously, right? Because all things considered, I'm still quite young. And so when they look at me, and I say, Oh, I have arthritis, they think that you're just doing that common, like everyone says they have arthritis, right?

Kelsey Harris:

Exactly.

Katie James:

I'm getting old and I'm stiff, and I roll out of bed and things are sore. And you know, you don't actually have arthritis. Yes, I do.

Kelsey Harris:

Yeah, well, I mean, like blood blood work and all that trail now. So least they can refer to that.

Katie James:

Yes, thank God. I mean, I have 10 years worth of paperwork, because the thing is, is that when you when the flare ups aren't there and overly aggressive, sometimes my blood work comes back quite clean, right? And there aren't significant markers. And so if I weren't taking Humira for example, and I let it sort of degrade, it will degrade quite quickly and we could go for ultrasounds, MRIs and bloodwork and the markers would be all over the place because I know how to read the forum's now in terms of like the specific inflammation markers that you you take blood work for. But if I'm on Humira, you know, like everything's regulated, and everything's normal, and so they don't quite show up. And so if I'm feeling fine and nothing's happening, and I go for bloodwork, it may come back, everything's hunky dory, and then the doctors are like, why are you here?

Kelsey Harris:

Well, let's, let's hope it doesn't happen. As far as like them not believing you. I'm like, hopefully your rheumatologist doesn't retire anytime soon. Even if she's alerting. Sometimes she's like, we're forever. True. Do you know? Um, so I'm kind of backtracking a little bit. Um, so you you mentioned you had really thought about arthritis and being arthritis. When you were diagnosed? What were your initial reactions to your diagnosis?

Katie James:

Um, I laughed. I mean, you hear the word arthritis at 23. And you're like, no, that's not a legitimate thing like the psoriasis because you can see it and you're like, Okay, like there's a name for it now because we're some people will just be like, Oh, it's just dandruff. You're like this is pretty aggressive dandruff and then like, why am I sore? Like, why? Do I have some joints that are double their size? And then I also have, like flaky skin like something, something's up. And unfortunately, when you start to self diagnose anyone who goes to Google for hype and symptoms, like it's just a spiral, it's a rabbit hole of doom and gloom. Yep. And, you know, I think we're all guilty of it, our brains go to the worst case scenario ever. And so even for arthritis, there's like a whole, you know, there's at least six or seven specific types, and they all have overlapping symptoms. And then there are things outside of arthritis that also have overlapping symptoms. So I'm like, do I have fibromyalgia? Because that's one that pops up on the internet, quite often, for anyone who has stiffness, joint inflammation, pain, yeah, but you can't quite pinpoint it to anything, right? It's easy for me when I can look at a hand and say, Oh, this one finger is doubled in size, but I can't see the internal joints like my hip, my back my jaw. You know, one week, I was just having smoothies because my jaw wouldn't open and close. Because the right the jaw bone right under your ear here. That opening and closing mechanism, right? It was swollen, but you can't see it right? And so like you're explaining to people like what is arthritis, it's mostly hidden. That's why I totally have appreciation for generally the elderly, who are in pain, but I think for me, it was just it was nice to have a name to something it was nice that even I could focus my reading and my research and learning more to something specific, right? Because even if you broaden it just to arthritis, you know, I can I can dive in and research the anti inflammatory foods, any sort of natural alternatives, right? I mean, I go to my doctor for specific medications, but then on my own, I can be proactive and looking at a new diet, for example, what kinds of exercises are applicable for me? You know, most recently, I've been experimenting with CBD oil to see if that makes sense for me. I've heard good things from a lot of people, but I've just I've been on this train for 10 years, and then I found the drug that worked for me. And as much as I don't want to rely on Humira forever, because I certainly my fear is that I become susceptible to it, and there's nothing else. Right. And so I have been quite active in looking at natural alternatives. So jury's out on that it's very new for me, CBD oil, but I just ordered two bottles. So stay tuned. Maybe I'll come back. I'll come back for another episode and give you the update.

Kelsey Harris:

Yes, I think that is a good plan. Yeah, I'm a huge fan of natural stuff as well, as you know, and it's, I think that CBD or like you said, diets and exercise, and like a lot of stuff is very much in our control, we should at least explore those options. So

Katie James:

I think it can't hurt, right? I mean, I'm not I'm not going to eat something that's going to throw my body all out of whack, particularly in a healthy capacity.

Kelsey Harris:

Exactly. Oh, it's worth it. Exactly. Um, so can you tell us a little bit more about your understanding of, of your type of arthritis and like, specifically what it does to the body?

Katie James:

Yes. So, you know, at a baseline for the psoriasis aspect of it, the body, the body produces skin cells, and most people don't notice. But I think on average, and I was quite the expert, when I was researching this, most of this has been purged from my brain because I had to fill my brain. So forgive me, but I think we run on a 28 day cycle of skin generation and then through activities like sweating and showering and whatever, like your dead skin cells just naturally fall off, and then they start regenerating. And so most of us don't notice because it's on like a slow build up, and then they naturally just sort of flake away. And what psoriasis is, is it's a very aggressive buildup of those skin cells. So you take a 28 day life cycle and you shorten it to like three to five days. Oh, wow. And so that's the reason why it accumulates and so you end up getting what's called plaque psoriasis or like flaky skin. It's like these little chunks that you can basically just like peel off. It's kind of like picking at a scab. It's like something's there, right? It's raised you can feel it. It's not smooth skin. It's not painful, at least in my experience, it can be very itchy it comes and goes depends on weather factors to like humidity and moisture and those types of things. But I think it's mostly just uncomfortable. And for those like I do know a friend of the family, she has it sort of all over and so you can see it on her arms and like it's been a lifelong battle for her because she's also taking Humira. That's how we were introduced originally. And it does help for it but I think for a lot of those that have severe plaque psoriasis, the plaque will go away but sort of the red blotchy skin Raise takes a while to heal. And so while it's a huge win, just to have that lesser skin build up, you'll still be left with this red discoloration, which, you know, is obvious when it's on your face and your neck and your arms and your legs. And you can't hide that from people. And so when people ask, oh, you know, what did you do to your arms? And then like, do you disclose that you have psoriasis? Or do you just, you know, laugh it away, because it's a bit of a,

Kelsey Harris:

right.

Katie James:

it's a bit of a vanity, you know, a pride issue. So that's my understanding of the psoriasis piece, again, tied to the immune system, because when the immune system is all out of whack, it sends signals to different areas to just be like, okay, we either need more or less production of certain cells or proteins. And for the inflammation side, it's the same, you know, inflammation is a natural occurring response in the body to things you know, we need inflammation in order to signal that things are wrong, either through injury or infection, for example, like if my finger just swells up out of nowhere, it could be an infection, and I need that signal, I need my body to tell me when something's wrong. However, at like a normal, healthy state, your cells can just spiral out of control, and they can just go to work attacking themselves, because they either see themselves as invaders, or other healthy cells as invaders. You know, I'm definitely like, painting a superficial aspect of it, but it is how I explained it to people it's like look like my body's just miss firing on all cylinders, when it comes to my immune system, and it doesn't know what's healthy and what's not anymore. So the response to that is inflammation. So it attacks random joints, I don't have a symmetrical type arthritis, which normally runs in an RA type of rheumatoid arthritis type capacity that like if you have it in your left hand, you'll start to see it and you're right. And not always but you will sort of see this symmetrical side. Mine just happens randomly to random joints. You know, where this started 10 years ago was my right hand and my right thumb, and then it was in my left foot, and then it was in my jaw and then it was in my lower back. And so on any given day, I can be in excruciating pain in a different part of my body, right? Which is annoying, and that's why it's like I don't want to run to the doctor for steroid injections for specific joints. That's why you want a Humira type product that or methotrexate or good anti inflammatory, I find they never really responded well, for me like any of those leaves or inflammatory anti inflammatory pills, they don't do a whole lot for me. It's just like Tylenol. Advil don't quite do a whole lot for me. Yeah. Or especially in a pain management type capacity, like I would need something significantly stronger.

Kelsey Harris:

Then I'm very strong anti inflammatories, and all he did is like mess with my stomach.

Katie James:

Well, that's the trade off. Right. There's always they're there. yet to come across a drug that doesn't have side effects. Yeah, which is true. Yeah. Humira is the closest because knock wood I have yet to see any significant side effects. But then that makes me wonder what the longer term acts it's just quietly

Kelsey Harris:

That's hilarious. Yeah, no, that makes sense. So how how did your diagnosis affect your mental health? If it did at all? I mean, you mentioned a bit of anxiety at times.

Katie James:

Um, the initial diagnosis, you know, it helped anxiety, I went through a significant wave of depression when I was battling this, and there wasn't a diagnosis. And it's definitely you know, I'm not the only person out there who feels this way in terms of like, What's wrong with me? Why is my body falling apart? You know, why am I in constant pain, you know, the psoriasis back then was bothering me as a, as a young woman and early 20s that I'm like, you know, you could start to see it every now and then it was sort of along the, the top of my hairline here, you could start to see it. And so I wear a hat. And I was very self conscious right now, like, Oh, no, I've got I've got dry skin and it's gross. When I was finally diagnosed, it's like that little sigh of relief, but at the same time, you're still in pain. And so having something to latch on to to research was great, but it was really only when my doctor put me on humera. And I saw that like, drastic, both pain relief and the psoriasis disappeared. Basically, within two to three days, like that first hit of that drug. It was life changing.

Kelsey Harris:

Yeah.

Katie James:

And, you know, I remember having a conversation with my brother at that time, because I lived with him. And so he saw me go through these years of pain like there, I couldn't get out of bed. I couldn't put on a T shirt one day because my arms wouldn't lift up high enough and just like simple things like putting on socks. You know, you take that for granted because my ankle hurts every time you touch something. It's that feeling of when you say stub a toe, Mm hmm. And that initial throbbing and that just reaction is like, Oh my god, it's like that all day, right? Any small movement, you know, I pick up something and your hand just starts vibrating and it just starts throbbing because, you know, recently I had a flare up with the with one of my fingers on my right hand. And unfortunately, it happened while I was traveling. And so I was, you know, lifting suitcases and throwing them on the belt. And then you know, traveling alone is stressful, but with a hand that's basically not functional. It made it all the more worse. But yeah, so I was having a conversation with my brother back then. And he said, You know what, I? I never thought or it hadn't occurred to me that there could be a cure for cancer or a cure for AIDS, for example. And they just haven't let it be known to the public until I saw you take Humira. He's like I watched you for the better part of five years. Experiment with toxic drugs, anti inflammatory pills, things that didn't work, right. And then here you are on this medication that you took one injection and within three days, everything was gone. The swelling was gone. The psoriasis that had been there for five years, wow. disappeared. And if you were to examine my skin, it was like nothing was ever there. And we're talking like scabby type skin. It sounds disgusting. But like at that plaque psoriasis level, like you're just flaking away and picking away at something and it can bleed, right, and it can scar. And for it to disappear Three days later, he particularly like I saw it on his face. He's like, it's, it's, you know, horribly depressing, but also mortifying that these drugs are here. And they do have life changing effects. But the majority of people can't get access to them. Because at 18 $100 a box

Kelsey Harris:

That is depressing.

Katie James:

I needed my doctor to fill out those government forms for me. In fact, I went to her office because she was giving me injections of the samples that the drug companies were giving, she would save them and when I would go see her, she would inject me for free.

Kelsey Harris:

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Katie James:

I know.

Kelsey Harris:

Does that that's incredible. And also Yeah, you're right. Like it's it's crazy to think that most like a lot of people listening might not even be able to afford to afford this kind of drug which could help them so much. And it's actually Yeah, like you said depressing to even think about that.

Katie James:

It's just really depressing on a mass scale, right? I mean, you have this this drug and it's wildly produced and and distributed. It's just, you know, and not to get down the rat race of you know, only the elite get access to these drugs. But you know, I couldn't afford it back then when I started but I had a doctor go to bat for me. Yeah, and that's the sad reality is that there's all kinds of loopholes right there are forms you can fill out but no one knows how to navigate them. No one even knows that they exist you know, the doctors know how to navigate the system. But you know, they do or do not depending on their own interests, right. And you know, not to say that they're I'm not going to paint doctors in some sort of unethical bubble just like police you'll get your bad apples every now and then. But for the most part like they do have an ethical duty and a responsibility to help wherever possible, but A lot of it is just sort of pushing paperwork, right if you don't qualify for this job, Okay, what else do we find? And so far in my type capacity, you know, any sort of Ra, psoriatic arthritis, inflammatory arthritis is like the general category when they can't quite pinpoint it to anything else, it just ends up being IAA. And you get methotrexate because that it's about 200 to $250 a needle, right? Which is still a lot of money, right? It's less than 1800. But you know, $250 is a lot.

Kelsey Harris:

Yeah. That's crazy. Yeah, this, these drugs are insane. But again, like, if they're hopeful, it's hard to find the money sometimes, but worth it. And, you know, hopefully, you can upgrade insurance that will help or if there are forms to fill out that can help, hopefully have a doctor like you have that can help. That's a little, I mean, like they're helpful, but then you have to wonder how helpful because they are not a cure. True.

Katie James:

And so knowing that some of these drugs come with their own line of side effects, you do have to make trade offs. And then I wonder, Is it just because in the medical system, or healthcare system in general, because we're not putting the funding into research of natural alternatives? Are we just behind the curve, right. And you know, there's the odd independent study here and there about tumeric as an anti inflammatory and you know, cherries is another one CBD, of course, is sort of the bigger one, but like, the the money and the funding behind it isn't on par with our pharmaceutical industry. And so there's a reason why we push these drugs, and I get it, but you just you have to wonder about the long term effects?

Kelsey Harris:

Mm hmm. No, it's true. And like you said, we just don't that you can find an odd study here and there, but one study doesn't prove anything. And no one's putting the money into more studies. So we just we have to rely on these. Um, you know, tell us, can you tell us a bit more about, you know, what you've learned about life dealing with your illness, but life in general about how you navigate life.

Katie James:

Um, I think that you should always be the biggest advocate for your health.

Kelsey Harris:

Mm hmm. I agree.

Katie James:

And again, I'm just reflecting over a 10 year journey where, you know, when I was 23, in the started and woe is me, and my hand hurts, and please, Doctor, like, somebody helped me I was the biggest, you know, just give me any drug, like anything that will make this better and make this pain go away, is first and foremost. Like, that's the mindset, you're reactive, you're emotional, you're depressed, you're angry, you're frustrated. I totally appreciate it. And then having navigated the pharmaceutical ways over 10 years and experimenting with drugs, because even on Humira, you know, that initial prescription was one injection every two weeks, I didn't feel comfortable taking it that often. And like it's a drug that I respond well to, but I did have a very candid conversation with my doctor about a, I'm afraid I'm going to be susceptible to this. And what happens if I then build an immunity to this drug, and then it never works. For me again, like it terrified me a future that if Humira didn't work, there was nothing else, but also just the longer term effects and because we don't know the longer term effects, so I did have a very candid conversation with her to say, Hey, is it okay if I experiment with this drug and just take it when I experience flare ups? And no, that's not the intended purpose of this medication, because you're always supposed to keep your immune system at sort of a baseline. And that's why you take it regularly to avoid flare ups, and I get it, you know, I'm taking a bit of a risk to sort of waiting for flare ups to happen, then you take an injection, and then they Calm down, and then they flare up, and then they calm down. But I think what I've learned in just doing that is how to experiment with other alternatives. You know, exercise is one of them. Mental health is key. I think the biggest takeaway over the last 10 years is that when I've had significant flare ups, or when my health has been at its worst, has been during my most stressful or my most anxious times, and, you know, the more research I do around anxiety and stress, and those triggers, and how they show up in different parts of the body, you know, the adrenal glands are a big one in terms of they're all kinds of natural herbs that you can take to occur, how your body handles stress, and that's outside of, you know, Humira and the immune system and the weird proteins that cause inflammation. And like, what if I were to just target another part of my body that regulates stress and the stress hormones and like, maybe there's a connection there. And so part of that advocacy for your own health is just you know, as much as I am a huge fan of the healthcare system, by all means, like I'm very fortunate. I found the most amazing doctor in the world. But I don't want to see her,

Kelsey Harris:

right. Yeah, exactly.

Katie James:

I don't look forward to seeing her she's a lovely woman, but I've told her many times, you know if I'd never see you again, Wouldn't be happy with that.

Kelsey Harris:

Yeah,

Katie James:

it means I have a reason to come back here, it would mean that I found something that works for me. And so I think that my advice would be to never stop experimenting with things that may or may not work for you. I think we should never be complacent, really, with anything in life. But we should always just continue to adapt to change and experiment with things preferably in a natural capacity. But

Kelsey Harris:

yeah,

Katie James:

I can appreciate where, where we need to augment with, you know, hardcore drugs, that's okay, too. But preferably things in balance, right, yeah. stresses the stresses. And it's, it's amazing to me how much stress how much harm stress can do to the body, you don't realize it when you're younger. But when you experience it on sort of a physical nature as you get older, it's mind blowing. And then the more research you do around it, how stress and anxiety are a key driver and a lot of health illnesses. Yeah, the more you want to curb that and say, oh, maybe I should take up meditation or yoga, or I should really be in tune more with my mental health, you know, I'm a huge advocate for that. So

Kelsey Harris:

body mind connection is something that no one really thinks about until you're kind of forced to think about it and you're like, wow, like, it really does make a difference. Agreed. Yeah, that's, that's great advice. Um, so how has having a stroke or arthritis affected your love life, you always have a very lovely partner right now. But has it affected it? How has it affected it?

Katie James:

Um, I would say it hasn't affected it. Um, you know, especially when I was younger, and I was a bit self conscious, particularly about the psoriasis, I didn't exactly disclose it.

Kelsey Harris:

Right

Katie James:

now, on the first date, for example, like, as you get to know someone and develop a connection, like, I certainly don't hide things from my partner. But and the reality is, is that when there are flare ups, they're going to see it, you know, my partner seen, you know, when I wake up and camp in my hand, or I go to do something, you know, even just more recently, with my finger, I was trying to put on socks and just that action of like, you bend your knee up, one hand, grabs a foot, one hand puts the sock on, you know, when one hand is not working, and his dominant hand like I am right handed and so my left hands fairly useless in that capacity. But, you know, they see it, they see the day to day they see the reality is, and so you can't hide something like that from your partner, you know, with with previous partners as well, like, I had to go to the ER one day because my arthritis was so out of control. And I just wasn't on a prescription at that time. I was in between jobs didn't have access to humera. So she took me to the ER, because she saw like, I couldn't put on a T shirt. Right. And you're just in so much pain that they ended up prescribing the oxy. Wow. Because they can just see it and they have their mechanisms there to evaluate, you know, the pain scale. And they're like, ah, girls like off the charts. And again, because you can't see it, it's internal, right? It's not like I came in with a broken leg. But you can see I'm coming in with what looks like a normal healthy body, but like my pain is out of control, right? And all they can do because they're just, you know, a quick triage until you can see your actual doctor or your rheumatologist again, right? They're like, Well, here are some pain meds we'll give you a small prescription to get you through for a week. But you know, and that's not the goal either, right? I don't like pain medications because for me, particularly they're bad on stomach.

Kelsey Harris:

Yeah, same,

Katie James:

I can't you know, I took t threes. Once when I had my wisdom teeth out and oxy. I've had. I've had quite a few prescriptions of oxy from other doctors for arthritis, because they just give it out as a pain management. But I never took them. Right. They just sat there for five years. And then they were expired.

Kelsey Harris:

Yeah.

Katie James:

Yeah. Which I feel awful, right. Like, there's pain management, but then there's like, I just I feel like this is

Kelsey Harris:

highly addictive, like, who wants to be in that position.

Katie James:

Yeah, it's not going to skirt around that it's a highly addictive drug also.

Kelsey Harris:

Yeah. No, it's obviously saying communication support with your partner.

Katie James:

Communication, it's important, I'm explaining what's happening. You know, kind of like this dialogue here. Like, can you explain you know, what's actually happening? And that's why over the years, I've I've just stripped down, like, what is the rises? What is arthritis, just explaining the sort of basic building blocks to what is happening in my body. And then finding those metaphors or those stories to point of, like, if I stub my toe against the wall, everyone knows everyone can resonate with that and they know what that feeling is like. And so when you kind of just paint this picture of like when I'm in pain, or I'm grimacing, it feels like that it's that type of pain. And so just being clear with your partner, depending on the type of partner you have, you know, they may want to reach You know, mine, for example, always checks in, like, How can I be helpful? Like, what can I do for you? And I've always been self sufficient. So my default answer is like nothing. I got this, I've been doing this for a while, you know, it is what it is. But at least just knowing that someone is there checking in is, is great. I know, it's particularly hard when we have these sort of hidden illnesses.

Kelsey Harris:

Yeah.

Katie James:

Mental health is another like anyone who who suffers from anxiety or depression, you know, that's hard to have those conversations with your partner as well. And like really playing what you're going through, and you know, for your other half to basically just be witness to, you know, you seem out of sorts, like you've seen down today, or you seem in pain, and I don't know how to help you. And so, you know, communication is the biggest, I think it's the only thing really I mean to, to navigate that with someone who's not experiencing it and not going through it, and they're just on the sidelines, witnessing it from an external point of view, the only thing that you can do is just be open and honest about what's happening, how you're feeling in the moment, what kind of pain you're experiencing, and maybe what you need or expect from them in that moment. If they just need you to go away, for example, like I'm not someone who needs to be coddled when I'm sick. For example, I don't like to be touched, I kind of just want to curl into a ball under a blanket.

Kelsey Harris:

Right? Okay,

Katie James:

I'll give you I don't need you to rub my back or anything. Like that's just how I deal with illness. But then my partner, for example, when she has a cold, like she wants to be around me like she wants to be coddled in a way. My brother was like that, too. Like, he needs constant attention, right. Bring me things I just wanted. So but like, you would never know that unless you communicated. That is very true, though.

Kelsey Harris:

Very good point. Yes. Cheetah life, I think, mind readers so. Exactly. And has it affected your career at all.

Katie James:

Um, it has not. Again, I'm fortunate that my career isn't overly manual labor through my day job is a user experience writer. So I work on a computer. The The downside of that is that when you're sitting all day, you're not keeping active. And so you have to set those reminders to get up and get out of a chair. Because arthritis, you know, the devil of arthritis is is still stillness, right? seems counterintuitive when it's painful to shuffle around, but you have to keep active because you don't do your joints.

Kelsey Harris:

Any good. That's right,

Katie James:

by sitting 12 to 14 hours a day on a computer. But so in that regard, it hasn't hurt my career in any way, I don't really disclose it to anyone at work. Again, I'm a silent sufferer. It's not to say that I couldn't disclose it at work. And I've certainly disclosed it during the pandemic, because I don't feel safe traveling. When I'm immunocompromised, I am like textbook and on paper, one of those people who falls in that category. So I'm going to hunker down and self isolate. And I'm not going to be the first cohort of people. You know, again, I'm in a fortunate industry that we're working from home, but I'm not going to be the first person to volunteer to go back to work, right, until I deem that it's safe. And I do have that that privilege and that that sort of safety net, through my employment, but no, over the years. I mean, you know, when you write for a day job, it's not overly taxing. It's mostly just mental work. I think the most uncomfortable times has been flare ups in my hands, because then typing on a computer is very cumbersome. And because I freelance and my passion projects are visual art. So I draw with pencil crayons,

Kelsey Harris:

you draw with pencil crayons

Katie James:

Why thank you. I try and be you know, and I draw on a realistic capacity. So it's very attention to detail. It's very dexterous, if you will. And so when I have arthritis flare ups, I can't draw and that bums me out. And then you sort of you slide into the anxiety, sort of somewhat depressed category, because I rely on art as a type of meditation, right? It's a type of sanctuary for me, I very much enjoy that activity. But if I can't hold a pencil properly to do artwork, and this artwork takes you know, anywhere from 12 to 48 hours for a small drawing, you know, then you end up with just putting that on the backburner. And then I don't draw as often as I, as I would love to be able to, and most of it just comes down to my actual ability to write. So it's not exactly something I can power through.

Kelsey Harris:

Yeah, exactly.

Katie James:

I don't want to make it worse either. Because, you know, I don't want to end up with some weird claw hand because I've been

Kelsey Harris:

Yeah, it might be a little awkward. And then, anyway, and

Katie James:

so yeah, I've been very fortunate in that my career. Thankfully has not been impacted by this in any means, like I'll come home after work after a long day and I'll take a bath and I'll do all my self care regimen because I still will be stiff and I will be feeling pain for the day but I don't think that it's impacted the actual nature of my of my career.

Kelsey Harris:

Yeah, that's great. Um, so you kind of touched on self care so obviously, art for you is definitely a form of self care, Babs You and I have that in common. dads are amazing. What else do you do for self care

Katie James:

that's are my go to they have always been my self care regime. And we're talking like Epsom salts, all the fancy salts, a bath bomb and bubbles amazing. And candles and a glass of wine and a magazine. That's, that's my

Kelsey Harris:

perfect,

Katie James:

my standard. I find that very helpful. Like there's just something very soothing about a bath, the Epsom salts particularly like we know that that does that helps for Yeah, for joint fitness and inflammation in general. And sometimes I'll alternate ice and like I'll have a hot bath. And then I'll put ice packs on things. Alternating heat and cold, sometimes helps artwork for me, I love walking. I'm a big like I love to put on podcasts, or music and just go for a walk or a hike if I have a trail. But if not, I'll just walk through the neighborhood for over an hour. You have a dog, so I'll take her for a walk. I'm a big reader, I have a lot of introspective type hobbies and activities. So I think those all contribute to self care for me. You know, anytime I have quiet time reading my new thing during the quarantine since we've all kind of just been not stuck in our homes, but you kind of evaluate what are your actual hobbies and right human being so I found myself gravitating to YouTube, just for tutorials of things. Oh, cool. I like how to receive my lawn in the backyard and we bought a new barbecue and I've never barbecued anything in my life. And so just diving into like, how would I prepare? You know, a brisket or beer can chicken or something it's got you know, I've been cooking a lot more lately. And so that is somewhat of a creative endeavor for me anything creative? I think my brain definitely is tailored towards you know, anyone who's ever experienced that flow state. Mm hmm. And it shows up in many like athletes experience it artists experience it musicians as well. Like it's a it's hard to pinpoint and describe the feeling. But for me, I have a lot of different creative endeavors. And so being in that state is probably like the best thing that I could ever do for first off parents just being immersed in what you're doing in the moment. And not thinking about anything else.

Kelsey Harris:

Totally.

Katie James:

There's no pain, there's no pandemic, there's no career stress, there's no, you know, relationship stress, it's just you in your element doing what you do really well. Yeah. So yeah, a lot of those types of things for me, gravitate towards self care.

Kelsey Harris:

Amazing. Love it. Do you feel like you're making the most out of your life right now?

Katie James:

I do. I think funnily enough, when the when this pandemic rolled around. The small upside is that I think it has forced people to hit a reset button and take a look at their lives. How do you evaluate the fragility of life? You know, are you someone who's afraid of death? Have you been making the most? Or have you just been coasting right, in our relationships and our careers and our health? Yeah, and you know, having this sort of, in your face, reminder, you know, everyone's wearing gloves, everyone's wearing a mask, you know, you read the news, you can't get away from it. And so it's just it's in your face this particular situation, but I think everybody adjusting to working from home reevaluating, oh, you know, I'm sitting in my house, and I'm bored and like, what kind of individual is bored,

Kelsey Harris:

right? I agree.

Katie James:

If you can't find something to do, that's a good time to just sit and reflect about, you know, and I get I'm a social being as well, like, I miss my friends and I miss being out as well. Like everyone, and it's hard, right? This is a really hard situation for a lot of people to adapt to. But do you have any other interests? Yeah, exactly. That like maybe this is the time to pick up a new interest. If you wanted to learn a piano if you wanted to, you know, even my brother bought a violin because he took violin lessons for quite a few years and then during the pandemic, he bought a violin and he's like, I'm gonna take this up again. Amazing. So it's it's that so I'm, you know, having this time to reflect on how I think life is gone. Yeah, so far, and it does it absolutely encompasses health. And you know, with a recent flare up, it's even more prevalent in terms of like, this is cumbersome. Absolutely. And it can be hella painful, but I'm not going to let my life be defined by arthritis, I will continue to experiment with things that work for me. Stay tuned on the CBD oil. I will continue to push and also just continue to be a little more strategic in terms of having emergency plans in place, right. I mean, I had a prescription last year of Humira and then I switched jobs, and then I didn't and then you think, oh, I've got two boxes in the fridge and I'll be covered. And then those two boxes disappear out of nowhere, and now, I'm stuck in the position where it's like, I don't have any Humira anymore. Right. Now, what do I do? And, you know, admittedly, it's not the first time that I've been in that situation. And so I think, for me, it's just time to smarten up and have a little better sort of emergency preparedness plan, if you will.

Kelsey Harris:

Smart. I've never even thought of that, as well. But to stock up on some medications, or make sure you have some money set aside for them is a good idea.

Katie James:

And I think so. Right. And I mean, we have that approach when it comes to finances, and particularly for COVID I think a lot of people have realized that, you know, that three month savings bubble sort of gone out the window, then it's like, oh, we would need to prepare, you know, if this were to happen again, in our lifetime, you know, having three months worth of savings clearly means nothing when hope it continues to drag on for the better part of a year and I'm like, why wouldn't we have that same mentality towards our health? Absolutely. Right, you know, you shouldn't let sort of those basic foundational elements slip away or be taken for granted. So

Kelsey Harris:

yeah,

Katie James:

that's why I'm a big believer in experimenting so that when I don't have Humira I'm like, what could be a fallback for me right? Is it just is it more fast? Does that actually work? Is it CBD oil, like something to sort of tie over until you can get back to a routine or a regular prescription or whatever, but

Kelsey Harris:

yeah, no, I think that's, that's really smart. And I think, I mean, I definitely can see that you are living an awesome life because I obviously we chat a lot and usually over text and I always looking at your Instagram because all you're barbecuing by the way it looks freakin delicious. I'm like, oh, man, like, I just want to eat some of the Spirit.

Katie James:

Thank you. Thank you.

Kelsey Harris:

Um, and where I like I've been saying you're amazing visual artists, and working people find your art, where can we follow you?

Katie James:

Right now I'm predominantly just on Instagram at I am Katy James. That's my handle. I'm in the process of putting together a website. It's sort of an e commerce site. So it's like, I was debating whether to just do a portfolio site or a site where people could buy prints or request commissions or whatnot. And so that was also part of my quarantine activity was to redo and actually learn coding and like properly do a website from scratch. Because I was going to hand it off to someone else. I'm like, this is a good time just to learn new skills. True. So it's taken me longer than I'd hoped in and around my actual job. So yeah, Instagram, I am Katy James, you can come and see some of my artwork and the OG BBQ BBQ endeavor.

Kelsey Harris:

Amazing. Katie, thanks so much for coming on today and and trying to us about your experience. And I definitely we'll have you back again. Because literally, all the time, so. Alright, cool. Thanks so much. worries, take care. So if this was your first app, listen to that episode. Hopefully you had some great takeaways from it. If it was your second time hopefully that you learn something new this time and have a few takeaways because that's the whole idea. Guys, I would love it. If you could subscribe rate, review the show, wherever you get your podcasts that would really mean a lot to me. I really just want to get the word out to chronic illness warriors spoonies. Anybody who identifies within that group, that there is lots of things that we can do to really improve our lives. And I'm going to be releasing a couple more of these flash from the past episodes while I've prepped to launch Season Two of chronically living and how to make the most of it really excited. I'll be back with new episodes by the end of the month.