[00:00:00] Intro: Welcome to AiArthritis Voices 360, the podcast solving

today's most pressing issues in the AiArthritis community. We invite you

all to the table where together we face the daily challenges of

autoimmune and auto inflammatory arthritis. Join our fellow patient co

hosts as they lead discussions in the patient community, as well as

consult with stakeholders worldwide to solve the problems that matter

most.

Whether you are a loved one, a professional working in the field, or a

person diagnosed with an AiArthritis disease, this podcast is for you. So

pull up a chair and take a seat at the table.

[00:00:45] Charis: Welcome to AiArthritis Voices 360. This is the official

talk show for the International Foundation for Autoimmune and

Autoinflammatory Arthritis, or AiArthritis.

My name is Charis Hill and I'm one of our podcast hosts and someone

diagnosed with the diseases we represent. My official diagnoses include

axial spondyloarthritis, Ehlers Danlos syndrome, and some other fun

conditions. Today, I am also joined by my friend and colleague, Jae

Walker. Welcome, Jae. Would you like to introduce yourself?

[00:01:24] Jae: Yes, Thank you, Charis for having me. My name is Jae

Walker, and I am also a zebra, like yourself. I'm in a multitude of

wonderful autoimmune diseases. I have rheumatoid arthritis, Sjogren's,

small Fiber Polyneuropathy Hypothyroidism, and it just gets more fun

from there. So I blog I'm an artist, I do artwork around chronic fatigue,

chronic illness, and pain from the patient perspective, of which you are

often a muse for me.

and appear in my artwork as a wonderful subject. And I also love to

speak up and talk about topics that patients love to talk about and are

really important to us that we don't always have a voice about. And that

we don't always have a chance to voice to our healthcare providers and

within the healthcare community.

[00:02:37] Charis: Thank you, Jae. It's so nice to have you here and to

talk to you as a colleague and a friend as well. So I invited Jae on the

show today to have a conversation about the ongoing reality of COVID

19 in our lives, especially for those of us who are navigating healthcare

settings that are no longer requiring masks or doing other mitigation

efforts.

Today we will share some personal experiences. We'll chat about some

of the current public health recommendations for higher risk people. And

we'll discuss some thoughts for how to protect ourselves and each other

from developing COVID 19. Before we begin, I do want to say that

something else to note about our show is that the conversation doesn't

stop here.

We spin off conversations from what is discussed today into what we call

360 its, or breakout conversations that expand on the topic. So watch for

those too as we build out our resources. Jae, I invited you to be a guest

today because this topic is so personal to you. And because you and I

began talking about COVID long before many of those around us did.

I'm wondering if you'd be willing to share what life has been like for you

over the last four years and any other details you'd like to share about

your experience with chronic disease?

[00:03:59] Jae: Well, the first word that comes to mind is struggle. And

the second word that comes to mind is fear. I know that when it all

began back in 2020, I know that you and I started watching what was

happening in China, it was a tremendous amount of fear. I remember

watching it knowing it was going to come here. And seemed to have this

weird concept and weird idea that somehow it was going to defy the

logic of the way viruses work and not show up on the shores of the

United States. The biggest thing, though, for me was I wasn't even

worried about that because I knew it was coming here.

The biggest concern was the way it was working, the way it was

affecting people. And the way it was taking people out immediately with

respiratory infections and the inflammation. We could tell it was

inflammation because we're so familiar with dealing with inflammation

because of our autoimmune diseases.

So it began for me with fear right away and I knew it was It's coming.

And even when rheumatologists, even when my other doctors didn't

seem concerned, I was concerned and I knew that it was coming. And I

remember going to my doctor and talking to them and saying please,

can I get a note asking for me to work from home because of COVID

once COVID hit here in the U. S. and I got a note to work from home and

then a week later lockdown hit in the U. S. and I have actually worked

from home ever since because they actually discovered that my team,

we all work from home, I'm a software developer. We all work on computers. They actually discovered that we work more effectively from

home.

So we're one of the few places that actually saw that and realized it and

stuck with it. Most places opened back up and said, nope, we gotta do

things the way we used to. And you know, everything else be damned.

And so it was scary though. I mean, I just became a hermit. I mean, I

couldn't go anywhere. I couldn't do anything, you know?

And the other thing is that I had a lot of personal trauma and fear

around, around this kind of thing because my mom had actually been in

an accident my senior year of high school and she had been on a

respirator and in a coma for a month. And so it sent me into a tailspin of

anxiety and fear on top of me having a personal understanding of what

inflammation was going to do.

So I had heightened anxiety on top of everything else. So I knew what

this was going to do for me because I had no immune system. I'm taking

medications that wipe out my immune system and I'm seeing people

who have regular immune systems being taken out, putting on ECMO,

you know, going to the hospital and dying.

And then I'm taking medications that are wiping out my immune system

just so that I can barely function, you know, and just so that I can

function on a day to day basis. So I'm, like, wiping down groceries that

are delivered, and I am wearing masks, and I am not in the company of

other people. And it was an extremely lonely and scary time as more

and more people got frustrated and just stopped caring after a while, and

the issue became political, instead of medical, it became harder and

harder for me, because I actually became depressed, because it

became evident to me how many people just didn't care about my life

and didn't care whether I lived or died.

There were people who literally said, well, you know, then disabled

people need to go. They can die, you know, and they didn't care whether

or not people who struggled with health issues lived or died, you know,

and then other people just didn't care because they wanted to be able to

run around and do their own thing and not have to worry about all the

little simple things like washing your hands, wearing a mask out in

public, making sure that you were safe, just doing all of these simple

things.

And these last four years are probably the loneliest, most difficult,

scariest years of my chronic illness journey. And I probably never would

have guessed that. I would have thought that the first couple of years

that I got sick were going to be my worst and my hardest because I had

to adjust. I had to re learn how to be sick and how to move in the world

being a sick person.

I had to re learn how to function and take time out to rest. I had to

relearn how to define my relationships around needing rest and needing

how to function, redefine jobs based on what I could and could not do

physically, redefine how to do everything based on my illness because

there's nothing in my life that my illness didn't touch.

And those first couple of years were the hardest of my life. And I naively

thought those were gonna be the hardest in my chronic illness journey.

[00:10:39] Charis: Yeah.

[00:10:40] Jae: But those were like child's play. These last four years,

ow, chilly, I'm gonna cry. But these last four years have been when I

have felt the most rejected, the most ugly, the most unwanted, the most

lonely, the most scared for my life that I have ever felt.

I have had the hardest diagnoses of my life. I've had to make the hardest

health choices of my life alone and in silos during this time when other

people didn't care whether I was safe or not. And I don't know how to

translate that or make people understand what that's like when they just

want to run around and walk around and act like nothing is wrong and

there's nothing happening and like breathing on me could not kill me.

[00:11:50] Charis: That's a lot. I hear you. I see you. And I want to just

mention to our listeners, you know, at any point, feel free to stop and

drink some water, take a break, and come back to this later, because,

you know we are being very vulnerable here. I'll share briefly that I've

been through similar emotions of, in terms of being isolated over the last

four years, and nothing has changed for me since 2020.

I still get everything either curbside or delivered to my door. I'm fortunate

to have friends who can go into stores for me if I happen to need

something. I haven't been to an in person doctor appointment in years

and I'm really fortunate to have access to telehealth. But anyway, yeah

we're talking about some really deep stuff today and I encourage our listeners to do some self care if you need to do that. So you had COVID

in September of 2023. As far as I know, I have not had COVID, but I

have been sick, really sick during the pandemic with like strep throat and

had to go to the hospital and things like that. But you have had COVID.

Would you like to briefly share more about that?

[00:13:13] Jae: Yes. I had a roommate who did not have the same

vigilance, let's just put it that way, that I did and felt that it was okay to do

things like ride in a lift and pull his mask down and talk to the lift driver

or, you know, go to work and take his mask off at different times if he felt

like he needed to, and he contracted COVID. And he came home and

would always reassure, oh yes, I'm being so safe, I'm being so safe, but,

gave me COVID, and I was so, it was, I managed to not get sick the

entire time until September of 2023 and I felt like I went through every

freaking symptom that there ever was for COVID.

It started with like congestion in my head and I, at one point, lost my

voice. I lost taste. I was fatigued. I could barely walk. I lost my appetite. I

had a migraine so bad. I almost threw up. I couldn't eat for a while. I

reached out to my PCP who is an internal medicine doctor. She actually

regularly reaches out and requests updated notes from my different

doctors, including my neuromuscular neurologist who manages my small

fiber neuropathy.

So she's constantly on top of what's going on with me. And so she was

like, do you have a blood pressure cuff? Do you have an oximeter. You

need to take and take your stats this often. She put a plan together for

me and said, these are your threshold. These are your levels. This is

where we're at. If you hit this level, you need to go into the ER

immediately, we're not waiting because I have asthma, on top of, and it's

not just the asthma, right? That's not just what the, you know, scary thing

is, right? It's but I also do IVIG treatments, which lowers my immune

system even more. Doing my blood work, my immune system is wiped

out. It's like I have the immune system of a cancer patient who has had

their immune system wiped out by, you know, you know, radiation.

That's what my immune system looks like. You know, so she's just, she

was just like, on top of it, on top of it. I hit a point where I was so bad, I

couldn't breathe like, all of a sudden, it hit my lungs. And, I could barely

talk for very long without being out of breath. I couldn't think for very long

without being out of breath.

That was scary. Like you could talk to me and ask me a question and I

could answer you for a few seconds and then I would shortness of

breath would start because I was thinking and I was like, I had never

experienced that before. She said, we have to get you on Pax Lovid.

Like we have to get you on this, like right away.

And of course my insurance required a prior authorization for Pax Lovid.

[00:17:12] Charis: I love it. I love this. It's great.

[00:17:14] Jae: Yeah. So with everything that I'm taking and everything

that I'm on and all of the unusual and rare medications that I'm taking, I

still required a prior authorization. Oh, I hate my insurance. And I got

approved and got the medication just in time. I was about, she was

about to send me to the hospital because my breathing and everything

was so bad. I took the Paxlovid and she was like, Okay, if your numbers

don't improve by tomorrow you're going into the ER tomorrow. Because I

had developed bronchitis within three days.

I had bronchitis, which is apparently what happens to me now when I get

sick. I develop bronchitis now every time. It's been my, my pattern now

for a couple of for years now. And so once I got the Paxlovid, Then the

symptoms started to get better, but the breathing did not get better, and

the shortness of breath did not get better.

It was like it kind of evened out a bit. The downward spiral stopped. It

just kind of, it's kind of, it was kind of like I was being thrown down the

stairs, and I suddenly stopped in the middle of the stairs, and I stayed

there. That's kind of what it felt like. And then I had to pick myself up and

start trying to climb back up the stairs, but I was still on the stairs, you

know, so I couldn't breathe and I was so fatigued.

I couldn't walk across the room and I created several pieces of artwork

around this and did a blog for Creaky Joints around this about what it

was like, what it felt like to try to breathe with this with COVID. It was

unbelievable. It was like nothing I've ever felt before. I actually went to a

long COVID clinic recently and have been diagnosed with long COVID.

And I now actually have mass cell activation syndrome because of it. So,

my immune system is all whiffed up into a frenzy and I have to carry an

EpiPen with me and my inhaler with me at all times because my body

freaks out at all different kinds of things and I can have a life or death immune reaction to things because my body The inflammation levels

are, like, whipped up to a frenzy now, all because of COVID.

[00:20:05] Charis: That's a lot. Thank you for being vulnerable with all of

that. It's a lot of information to share about your personal journey, and

I'm sure our listeners are appreciative of knowing more, while also

potentially being horrified that this all happened to you. So thank you. I

mean, I can only relate in terms of being isolated and afraid of getting

what you had.

So, I am also on immunosuppressive medications and even before I

knew I had axial spondyloarthritis. As a kid, I got really bad pneumonia

in middle school I wasn't on immunosuppressive meds at the time

because we didn't know I had a chronic disease, but we do know I have

an autoimmune disease now, so that was probably what happened, and

I was delirious, I should have been hospitalized, I can't speak today and

I was in bed for I think three weeks, and so I know.

That if I get a respiratory illness, it will get bad really quickly. And so I've,

and I've been fortunate, like I want to recognize my privilege at being

able to stay home, I don't have to go to work in person, I don't, I'm not

forced to go to grocery stores because I do have access to curbside

delivery.

Hearing stories like yours, and knowing that your story is not

remarkable, because it has happened to so many people, makes me

concerned that so many things are going so called back to normal,

where there are no mitigations in place. And so, I want to transition into,

The next part of what we're going to talk about, which is like, basically,

why are we talking about COVID on this show?

What makes it unique to our community? I think we've already

addressed that. The fact that we are both immunosuppressed because

of medications we take, we fall under that high risk umbrella. Many of

our listeners are also on medications that suppress their immune

system, or they are immunocompromised without having to take

medications.

And in other ways, people are considered high risk. So I want to bring up

a quote from one of the blog posts that you wrote on Creaky Joints in

this February, actually. And you kind of touched on this when we started this episode by talking about, like you and I starting to talk about COVID

early on, but so here's the quote.

Quote, I began studying patterns of the virus when it was wreaking

havoc in China and had not decimated the U. S. yet. I read everything I

could get my hands on. When it came to the U. S., I had the Johns

Hopkins virus case counter up on a tab in Chrome at work and home. I

could and did educate various doctors that I saw for treatment, unquote.

Are you still educating doctors, Jae?

[00:23:25] Jae: I'm still educating doctors why I have to wear a mask.

Like, for example, I'm having issues with my small fiber neuropathy and

I'm having my spine is compressing. Spinal stenosis and some other

things going on. And I just had some SI injections done. And I requested

that my pain management doctor and his small little team of nurses, like

two nurses in the room, that they all wear masks.

I wear a mask. I can't have anesthetic because no one I swear a lot

normally and I'm doing, I feel proud of myself because I'm trying to keep

that under control, but it makes me very angry. So I'm trying not to

swear, but like they, they don't wear masks. Okay, so for, and I can't go

under for anesthesia.

Now, I really need anesthesia, even though it's a local, but I need

anesthesia for something like this because of my fibro. When they do a

local for an SI injection for me, fibro kicks back and makes me flare and

makes it worse. So in reality, I really need to go under so they can give

me an injection and I can get the full effects of a nerve block.

But now, because no one is wearing masks, I can't do that. So I have to

wear a mask and be fully awake and not get the full effects of an SI

injection. And I had to ask my team if they can wear masks. So there are

two procedures I've had. One was a trigger point injection that they did

first a couple of months ago and oh, they were willing.

Okay, fine. Yeah, we could put a mask on for you oh, no big deal. Oh,

and they were happy to do it blah blah blah And then this last time when

I asked them again to put a mask on well, my doctor was freaking

annoyed that I asked for it. Is there a reason you need a mask? Why do

we need that? You do you have an immune system?

Is there a problem? So I'm sitting there, vulnerable, in pain, laying on

my stomach, waiting for this injection, trying to explain to him because I

see a nurse practitioner in his office and he's the one who does the

injections. He's the one I see regularly. And I explained to him, okay, if

you look at my blood work, I have no immune system.

I need for three people to not stand over me and breathe on top of me

their germs because they are in close proximity to people all day long.

And you could be carriers of COVID, of the flu, of RSV like of anything

else, strep. Strep is so bad. We could die from strep, just from the

immune medications that we take.

Not even just COVID. But, you know, read the inserts of your

medication. Read the inserts. It's right there. Chicken pox, people can

die from chicken pox. Even if you've had it. It's right there. And so I have

to educate my doctor. Yes, I need you to wear a mask because I can't

have you breathing on me. And he was not happy and he sloppily put his

mask on.

And he did the injection. And I was so mad.

[00:27:39] Charis: Yeah, unfortunately, I've had similar experiences and

I don't want to go through all of the stories because there's so many,

because I want to, you know, our listeners are probably fully aware of

that because I have so many stories that I'd love to share, but I can't.

We could do a whole show just sharing stories, I know. And it's difficult

to navigate those situations as people who are educated and also

receiving care and wanting to be respected and receive care and also

safe in terms of protection for viruses, but also safe from harassment.

And sometimes we have to navigate like okay, what's the better option

right now? Is it to advocate for safety with the mask, or is it to advocate

for care and forego the fight for the mask? Because and we have, we do

have a lot of healthcare professionals who listen to this show. And so I'm

wanting them to be aware that we do juggle, you know, what's more,

what is the priority, just like they juggle, what's the priority?

Do we treat the patient with this or that? Anyway I want to shift a little bit

to talking about current public health guidance. But before that, I want to

share three facts that I found interesting recently regarding COVID. So,

number one, as of May 1st, hospitals are now no longer required to

report COVID hospitalizations to the CDC.

So we now don't really know how many people are being treated in

hospitals for COVID 19. The second, is that across the country,

wastewater data are showing COVID levels rising. And I'm in California

and San Francisco recently reported some of the highest concentrations

of COVID in wastewater that they've ever measured so it was in early

June. And the third thing is something that is in the news a lot lately,

which is that there are states that are now considering making wearing

masks illegal. So North Carolina and New York are top of mind. I'm from

North Carolina, so I'm paying attention to that one a lot. And who knows

what the outcome of that will be by the time you are listening to this.

So having said this yeah, New York. So Mayor Eric Adams has talked

about trying to ban masks in New York for months now. And I think was

working with businesses to try to ban them and I think now it's sort of

moving up towards the legislature. Yeah. So having shared all that but

where, what is the current public health guidance?

Like what is the current context? So I want to start with the CDC. On the

CDC webpage that gives COVID guidance for people who are

considered high risk, the first directive says, quote, if you have one of

these conditions, talk with your healthcare provider about how best to

protect yourself from severe illness from COVID 19, unquote.

Jae, we're on that list. People who have suppressed immune systems

are on that list. We can talk about this, can't we? I mean, so it's kind of

obvious that based on that first directive, talk to your healthcare provider.

If you're on that list, it's important for rheumatologists, for dermatologists,

for other specialists who treat people with AiArthritis conditions to be

knowledgeable about what many of us who are immunosuppressed or

immunocompromised experience and what we need. So anyway, I know

that you're wanting to share some thoughts on that so go ahead.

[00:31:58] Jae: Well, I mean, I think it's important, especially if we do

have healthcare providers who are listening to this. I think one of the

things that I would want to stress is that they need to make it a safe

space for patients to talk about this kind of stuff, a very safe space,

because that's the biggest thing is patients very often don't feel safe

discussing things.

They feel afraid to talk about things, especially something like this. One

of the things is that you know, maybe, first and foremost, a healthcare

provider might have to be the one to broach the subject to bring it up and discuss, you know, Are you taking necessary steps? Are you feeling

safe? Are you able to mask when you need to mask?

You know, that would be a huge weight off of a patient's shoulders

because we're already juggling so, so much. We're tired. We're fatigued.

Chronic illness patients, especially. We juggle and we wake up in the

morning and we have to figure out what we have the energy for. We

have to figure out what we have the strength for, and if we have to go to

a doctor and feel like, okay, maybe we have to educate them or talk to

them about something that's difficult, it isn't just that day.

We actually spend time and energy ahead of time preparing to talk to

that doctor. So it's time and energy ahead of time. And with these

directives, these are confusing. Because you have the CDC telling us,

okay, we need to talk to our doctors, yet the spaces that are supposed to

be safe for us are pulling out and not supporting us in ways that we need

support.

Like, now hospitals are not going to be doing it, and, you know, states

now are considering banning masks. It's I mean, what are we supposed

to do with that? How are we supposed to deal with that? Me, I have to

wear a mask every time I go out.

[00:34:42] Charis: Yeah, me too.

[00:34:43] Jae: I've created artwork around that. I have a piece of

artwork called Bullseye because I feel like I have a bullseye on me when

I go out, no matter where I go.

I go with doctors who deal with high risk patients, my allergist, my

rheumatologist, you know, endocrinologist. Doctors who deal with

patients who are in a situation where they should be wearing masks.

Now, there are patients there who wear masks, but the doctors aren't

wearing masks, and the healthcare providers, where I see my doctors,

none of them are wearing masks.

[00:35:34] Charis: Yeah, and it's getting It's confusing, and it's difficult,

and it's scary. Yeah, those are really good for us. Yeah, for sure. Yeah,

bringing up the whole fear part and being tired extremely valid and I

think a lot of our listeners can relate to you know, it takes energy to plan

for how to self advocate it takes energy to recover from self advocating it

takes us. I Didn't realize until my first outing.

And this was in 2020 when people were supposed to be staying home,

you know, and I remember just going with my partner at the time just for

like a drive and realizing how much energy it took just to leave the house

now. Like it takes energy to leave with a chronic disease sans COVID

being the reality.

But with the public generally being an unsafe space for us, it's like

exhausting because you're mentally preparing and then you're mentally

experiencing and then you have to recover. But I'm going off topic a bit

on a tangent, but it's so valid to remind health care professionals that we

are juggling what the priority is when we're in that appointment that

hasn't changed and with the reality of COVID mitigations going away,

that's just adding one more thing to the list that we juggle. I want to bring

us back a bit to another part of the CDC website, which is the CDC page

on how to protect yourself and others. This was updated April 4th, 2024.

And the recommendation is that you wear a mask, distance, and test

when around high risk people.

Okay, so the thing is, how do you know when you're around high risk

people? That's right. Actually, like, I think the easier question might be

how do you know when you're not? Like, for example, like the CDC list

includes people like us who are immunocompromised, people who are

disabled, But it also includes conditions and situations like depression,

pregnancy, and smoking.

Yeah I mean, like, it's just funny to me how people just assume that

disabled people don't exist in public. Yeah. Like, oh, I'm fine not wearing

a mask in the grocery store. There are no high risk people here. How do

you know that? Yes. So I always joke about how the CDC is telling on

itself. Like it's really saying you should be doing these things all of the

time because high risk people are everywhere, except that's not how,

that's not what they actually mean.

Anyway, I just could not bring that into this conversation.

[00:38:46] Jae: Because if we're really following their recommendations,

like, that's what we would be doing. Everyone would still be masking,

and we would, in public, in, in any place where there's, like, that's just

what we would be doing. Right. You know I don't go on Facebook much,

but I was on Facebook, and there was a friend in Asia, and I mentioned

how I'm frustrated because I now actually have an in homes barometer

to test my asthma because since all of the guidelines and requirements for masks and stuff went away, I can't test my breathing at my allergist /

immunologist's office because not only do they not require masks, but

somebody will come in coughing and hacking and they won't get up.

They have masks right there that they offer people, but they won't get up

and go over and require that person to put a mask on. They'll just let

them sit in the waiting room hacking and coughing and spreading

whatever it is that they're spreading.

And, I'm like, I can't take my mask off. Take a deep breath in, and

breathe into this machine you want me to breathe in to test my breathing

because I'm gonna suck all this air in. And, not only do I not, I mean you,

I can't believe that you run an office like this and I, I mentioned

something about how they don't require masks in that office and this

friend of mine who lives over in Asia was horrified and said, I absolutely

can't believe that.

They know everyone here wears masks and no one has stopped

masking, and they still wear masks over here in Asia out in public. They

wear them in doctor's offices, and they wear them out in public. No one

goes without a mask. And it's just, they were just horrified. And I'm like, I

don't, I'm horrified too, because I, so now I have to spend a co pay every

month now, so that I can have an in home handheld device so that we

can know how bad my breathing is because I can't do it in the office.

[00:41:24] Charis: Yeah, I, that actually brings to mind the financial

implications of what like, we are financially impacted by healthcare

environments being inaccessible, whether it's to pay for extra healthcare

costs like co pays, or if we're delaying or foregoing care and it ends up,

like, affecting us down the road where it'll be more expensive on us.

And on the health care system and I feel like we could do a whole

episode on that and maybe that can be a spin off one of the 360 it's I

mentioned earlier cause we just don't have time to go into it today, but

that is a really good point to, to put in there. Considering all the impacts

on patients who are high risk it's mental, it's physical, it's emotional, it's

financial.

And that's just the healthcare related side and we could do a whole other

spin off on just the social side of just existing you know, in public and in

our day to day lives so that we don't run out of time. I do want to shift to

some, like, you know, how can we be proactive a bit and like, so

considering what we've talked about, all the personal stories we've shared, the systemic issues we've shared some of the public health

guidance we've shared.

What do we do about the current state of COVID and accessing

healthcare as high risk people? So let's do like three, three things that

we can do individually or systemically. I know I'm putting you on the spot

here.

I can start if you don't want to, if you want to think about it.

[00:43:24] Jae: Yeah, you start and go ahead. Give me a minute.

[00:43:27] Charis: Sure. Welcome to Charis hosting Podcasts. They put

you on the spot. So, well, so in my notes for this show I wanted to bring

up the Americans with Disabilities Act and the fact that the ADA does

guarantee equality for all in health care, you know, access, basically

disabled people have the right to access health care and have

accommodations to access health care equitably and safely. And that

includes respiratory viruses. So I actually looked up the people's CDC

website and they have a letter template where people can write an

accommodations request for a doctor's appointment.

There's a template and you can fill out, you know, what makes sense for

you. On it are things like air purifiers, testing before the appointment,

and these are for the health care environment and health care providers,

N95s, being able to enter a side door. I can't remember what else, but so

there are resources out there to request ahead of time accommodations

and that way it's on paper.

It can go in your file as a request that you can refer to later. You can

request a response in writing. I actually have a story about requesting

accommodations and it did not go well. And I do hear stories where

things like this don't go well, but it doesn't hurt to try and the more of us

who do it, the more likely I think.

So, I think the second thing is actually from the CDC High Risk

Guidance page, their last sentence is quote check with your healthcare

provider about safety precautions for office visits and ask about

telemedicine or virtual healthcare appointment options, unquote. So,

that's another thing you can do.

And I'll say my third one is sort of more, it's personal with an individual

as well as systemic. And that's like just sort of a list, like, okay, wear

masks. It's okay to just restart wearing masks. If you stopped, you can

just restart. It's easy. Test do air filtration for the doctors out there I and

Jae mentioned this earlier, actually, I wrote this in the notes. I have a

personal plea for you to initiate conversations with patients about

COVID, about long COVID, about their immunosuppression and high

risk and please wear N95s. Don't make a patient ask for them. And then

like I said, on a systemic level, advocate for mitigations to either

continue or come back.

The People's CDC has some resources for that. The World Health

Network has some resources for that. And maybe, like, work on an

airborne infection mitigation protocol for your own organization or

business or group. You can go above and beyond what the current

public, official public health recommendations are.

Did that bring up anything to mind, Jae, that you wanted to share?

[00:46:57] Jae: Yeah, I think there are a couple of things. Sometimes it's

hard for people to advocate for themselves. So I think it's good to think

about stuff ahead of time, figure out what is important to you. Well,

here's one thing that I do. So I have masks at home and I keep them

handy by my front door.

So I live in an apartment, right? And when I have, no one comes in my

front door without a mask, period. So what I do is like, if I put in a

request that something has to be cleaned or fixed or whatever, they

come to my door. I greet them at my, like I put in a request and I say

they have to wear a mask. If they come to the door and I say, Hey, do

you have a mask?

If not here, I have one for you. So I will provide a mask. So one of the

things that you could do is show up to your doctor's appointment with an

extra mask, right? You could have one in your pocket. There's no harm.

I've asked doctors before, can you wear a mask? And they have put

them on for me for the appointment.

Right? And I've asked them several times and then after that they just

remember and they'll do it for me. So I have doctors who do that and

sometimes, you know, I know there are people who are a little bit more introverted. So maybe sometimes, maybe bring somebody with you who

can sort of help you, give you courage and right?

Who can kind of be your backbone or just be in the room with you if you

need them to while you ask for the things that you need to ask for, right?

You can kind of bounce ideas off of them and say and just have a short

conversation with your doctor. Say, Hey, I am just like what you were

saying, Charis, I really need to feel safe.

And in order to feel safe, I really need you to wear a mask with me, but

bring somebody with you. So that, and then you also have a witness to

whether or not that doctor says yes or no. So that's also good to have in

your corner as well, right? Because there are some amazing doctors out

there, but there are also some doctors who sometimes they will bend if

they have an audience, whereas they would not bend otherwise.

Let's just put it that way.

[00:49:35] Charis: I want to mention that all of our listeners who are

doctors are amazing. I'm 100 percent positive. That's right. We right.

Yeah,

[00:49:48] Jae: but sometimes, you know it's, it can be hard to advocate

for yourself. I would say write down your points in a notebook, bring a

notebook with you with the points that you want to ask for.

I think that's really good. You can. You could have a sheet of paper and

say, hey, can you put this in my file? Because this is important and this

is like what I need. So that they know from here going forward, like you

need masks, right? Anybody who deals with you, they need to wear a

mask. It's not just the doctor, it's the nurse too, right?

Just whoever it is. I don't know I'm focused on kind of on the patients, I

guess because I know that it's not always easy to speak up for yourself,

and it's not always easy to kind of get there. So maybe you could also, to

help you, and to support what you're saying like what Charis you have

pointed out, is maybe print out what the CDC says.

Right? For what immunocompromised patients should do. Print that out

as proof. And then take that to your doctor and say, Hey, this is what I

feel comfortable doing, and here's proof. Right? Because sometimes

that's what doctors need. They need proof. I have a doctor who is like that. I can ask and plead and do whatever, but if I show him data and

information, then he will, we will go there and that's what will happen

with my doctor.

So that's a good one, too. So you can print out data and information like

the CDC website and information like that. So I think that's a really good

one too, is to bring them proof that this is what immunocompromised

patients should be doing. This is what should be happening for our care.

So I think that's a good one too, to sort of have in your back pocket and

show and say, look, this is the kind of care that I deserve and that I

need.

[00:51:56] Charis: Yeah. Those are some really good suggestions.

Unfortunately, I believe we are out of time. We have filled this episode

with so much and there's so much to continue this conversation about.

To our listeners, please let us know if you'd like to hear more on this

topic and tell us what stories of your own do you have?

What's worked or hasn't worked for you? We always love hearing from

our listeners. And I think that's a wrap. Jae, thank you so much for

joining me today at the table. Thank you so much for having me. I

always love talking to you.

[00:52:34] Jae: And we could talk about this topic forever,

[00:52:37] Charis: obviously. Totally. So where can people find you?

[00:52:43] Jae: These days I am. You can find me on Facebook under

Unexpected Advocate. I am also on Instagram under Unexpected

Advocate. And then you could find me on Threads under J A E L E A H.

Walker. W A L K E R. And my artwork is spread out all through there

along with my blogs and all my stuff's just there so you can see some of

my stuff.

And on CreakyJoints org they have my artwork and stuff.

[00:53:20] Charis: Awesome and I do encourage listeners to check out

their artwork. It's amazing and I'm kind of partial because I'm their muse.

So awesome. So listeners make sure to follow our posts on social media

about this topic and comment or message your own experiences or tips.

We can be found on all platforms, Facebook, X, Tik Tok, Instagram,

LinkedIn at I F A I arthritis. That's @IFAiArthritis, you can check out this

episode in all episodes along with our amazing patient design programs

and resources at aiarthritis.org. And while there, please click that big red

donate button because we couldn't do the work we do without your

generous support.

Thank you all again for tuning in and we hope you learn something new.

[00:54:18] Intro: AiArthritis Voices 360 is produced by the International

Foundation for Autoimmune and Autoinflammatory Arthritis. Find us on

the web at www.AiArthritis.org. Also, be sure to subscribe to this podcast

and stay up to date on all the latest AiArthritis news and events.