[Courtney] Hello everyone and welcome back.

My name  is Courtney.

I am here as always with my spouse, Royce, and together we are The Ace Couple.

And  I’ve made no secret of the fact that I am a woman of many maladies, the primary one being  Ehlers-Danlos Syndrome.

Everything seems to come back to EDS.

Once you’ve got a defect in  your connective tissues, every new diagnosis, syndrome, symptom that you acquire and pick  up and collect and add to your hoard along the way can always somehow be traced back  to EDS.

And we’ve talked about EDS before, and you can certainly listen to  our previous episodes on the topic, but we were just having a fun, goofy  little conversation, just the two of us, the other day, and I thought this would be a  fun idea for an episode.

Because, rightfully so, we have usually centered my experience, but  we’ve been married 11 years now, Royce, you are a rather healthy person, quite able-bodied,  certainly neurodivergent, but I think it would be fun to talk about your experience of living  with someone who has EDS, among other things.

[Royce] Well, I’m trying to figure out  exactly how to go about this.

I think it’ll be an episode with a lot of tangents,  but I think you sort of keyed into the first one we’ll talk about just a moment ago.

And if  you are around or close to someone with EDS or, like you said, another type of rare-ish, often  underdiagnosed or misunderstood condition, one thing that invariably is going to happen  is you’re going to get really good at googling random symptoms and trying to figure out if  they’re connected.

[Courtney chuckles] I know that doctors say don’t do this, you just need  to be careful, you need to be sensible about it.

[Courtney] I mean that’s such a good point  because this was a lesson I learned long before I met you that a lot of my  doctors are in no way prepared to handle my specific medical case.

A  lot of them do not have the skills and curiosity and empathy necessary to  put in more research to learn about it.

[Royce] That’s when we’re talking with general practitioners.

Sometimes it’s even  hit or miss on the specialists.

[Courtney] Yes, that’s very true.

So I knew a  long time ago that I had to sort of do my own research and be my own advocate.

And I landed on  Ehlers-Danlos Syndrome long before it was actually added to my charts and I saw the right specialist  who was able to look at me and say, “Yeah, all of this is textbook EDS, you’re absolutely right.”  So I learned that through trial and error and bad experiences with doctors.

But I guess I haven’t  even really asked you this, because you are someone who just naturally does research things.

You’re very curious, you like to understand things, and if there’s a problem you like to  try to solve them.

But your medical history is not complicated.

You don’t have to see doctors.

So  all of your googling of symptoms, or most of them, pertain to me and you’ve gotten pretty darn good  at it over time.

So what, what was that like?

[Royce] I think, like in all things, I  have gotten better at this.

I think that, for a variety of reasons, I am just pretty  good at sorting through information online and figuring out what is misleading or not.

Some  of that, I think, comes from my career field, some of it comes from practice, some of it comes  from just needing to get where I am in my own life with my own understanding of myself,  given that I had to, at different points, realize that I was not the typical status  quo person for sexual orientation, gender identity or, like brain wiring, whatever the  word for neurotypical versus neurodivergence is.

[Courtney] Yeah, you’ve got that weird brain.

[Royce] Yeah.

So I’m used to having to have a  thought about something and then step back and look at that thought and see if it’s reasoned  or justified.

And that’s what you have to do, so that you don’t go off the deep end when you’re  looking at medical symptoms.

Because oftentimes, given how different people’s bodies are, when  you look at the population as a whole, yes, a wide variety of people can have a wide variety  of different symptoms or reactions to things, and many of them are not typical.

So you have to, you know, make sure you don’t feel bad  one day and go, “Oh no, I have cancer.” [Courtney] Right.

Well, that– that’s why  I’m curious.

Because I know that you do fall outside of a lot of social norms, so  you’ve had to do a lot of self reflection.

And your general personality is normally:  if the rules don’t work for me, fuck them.

But so it seems to me like probably  your natural proclivity is to google and research and try to figure something else  out, but you just probably didn’t have many reasons to do that before meeting me.

So I’m  not sure if you landed on that on your own or if hearing my medical history and what I  had to do to get a diagnosis got you there.

[Royce] I hadn’t had to exercise those impulses to  try to draw connections and make things make sense as frequently with myself.

Before we met, there  had been cases where, in terms of personal health or personal fitness, or if I did have something  that wasn’t a chronic condition or wasn’t an injury but I had, like I don’t know, a joint pain  or some minor thing that went wrong.

More recently it’s been how to, you know, rehabilitate certain  muscle groups or joints or something like that.

Or these last few years I’ve been reading a lot more  about nutrition specifically and how the vitamin deficiencies start or manifest or what some of  the symptoms can be if you are actually getting too much of certain vitamins and minerals.

And it’s the research process is the same.

It’s really hard to actually figure those  things out and land on anything because it’s hard to find reliable information, actually parse  through it.

But I do have a fairly regular habit of doing that.

And I mean, you have talked  both on microphone and just with me over the years about your process of self-diagnosing.

I have a tendency to look things up when you do mention a new symptom.

I called a new thing  very recently, a few days before a doctor visit.

[Courtney] This was so good.

And this is how  you know we’ve been married as long as we have, and that you just, like, really understand  my medical history so much better than most of my doctors.

It was so funny because I got  some blood work, some numbers were unusual.

I had a primary care provider who was like, “All  right, we want to redo this blood work because we want to see if it’s changed, if these numbers  are still unusual.” And I was asking, well, what could these numbers indicate?

What does this mean?

Is this a problem?

Could this be dangerous?

Like, what does it mean?

And the answer was just, “Well,  it means we’re going to redo your blood work.” Okay, if you redo my blood work and  the numbers are exactly the same, what does it mean?

They’re like, “Well, that  means we do other tests.” Other tests for what?

[Courtney] This was the most frustrating  conversation I’ve ever had, because they just, like, refused to tell me what this could  possibly be or mean.

And so I was actually in the process of trying to find a new primary  care provider, so when they told me I had to redo my blood work anyway, I was like, maybe I’ll  do this with a new doctor.

And when I told you, oh, this is the number that’s weird, this  is the test they want to redo.

You just, like, grabbed your phone and a few minutes later  you’re like, “Oh, I bet you have this syndrome, because I found a forum of people with  EDS talking about having this also.” [Royce] Yeah, I mean the process was:  I looked at what the thing was, like, the thing that was measured in your  body that was wrong, that was elevated, and I saw a list of common causes; and one, it  said it was not an uncommon thing for people to have and was also hereditary.

And I know your  family history better than most of your doctors.

[Courtney] Yes.

to not completely cross off but reasonably  reason out.

Like, if I were to assign percentages to all of the different causes  or symptoms or manifestation and go, well, it’s probably not a temporary cause based  off of this, this or that.

It’s probably a heritable thing that’s been in your family  for who knows how long.

And then I just did, the quick search that really works, is  to search the name of some new thing EDS.

[Courtney] Yeah, the symptom EDS.

[Royce] Yeah.

[Courtney] And then, like, look for forums.

Because even if there isn’t a medical, like– Sometimes you will actually  find, like, health studies, where someone is looking into something and  finding a correlation between two things, but sometimes you can’t find any, like,  formally published documentation on this thing.

[Courtney] You go to like a Reddit  forum or previously I was in, you know, EDS Facebook groups back in the day, and you’d find just like dozens of people  saying like, “Yeah, my doctors don’t know why, but this weird thing happens.” And then all of  them are like, “Omg, me too!” “Oh, also me too.” [Royce] Oftentimes these threads don’t establish  a clear through line.

It’s someone saying, “I’m getting tested for this right now.

Is this a  common thing here?” And then another person will say, “Well, I have EDS and my levels for this  thing are always really high too.

I’ve never been diagnosed with this other named syndrome,  but I’m exhibiting the same qualities.” Or you have two other people that are like, “Huh.

I  have another interesting correlation here.” And between people on that thread comparing  EDS and POTS and Mast Cell Activation Syndrome and this fourth other thing, it was like  this is a pretty reasonable possibility.

next day I went to brand new doctor and  I was like, “Alright, here are all the things that I don’t feel like were properly  addressed with previous PCP.” And also, “Hey, this blood work came back weird, what do you  make of that?” And new doctor was like, “Yeah, let’s redo your blood work, let’s actually  redo it sooner than your other person was recommending.” And so they just took my  blood again that day, a couple days later, and the very next day they come back and they’re  like, “Yeah, you probably have this syndrome.” I’m like, “Great, my spouse told me that like  three days ago.

Thank you for confirming.” [Royce] At least they ran the proper test to tell  the difference.

[Courtney agrees] But that’s a good point of, I guess, going into visits with  [sighs] you don’t want to go in with confirmation bias, you don’t want to overly convince  yourself that it has to be this one thing, but going in with some additional knowledge.

Because not too long ago, during all of this, you had to get blood drawn more than once,  and usually, if you know this ahead of time, I have to go with you because you might not be  able to drive yourself home because of problems, and it has been such an issue getting  phlebotomist to take it seriously.

[Courtney] Oh my gosh, yes.

[Royce] And normally I don’t speak up, but during  this one, you had to leave the room for a moment, and I turned to the phlebotomist who was  still setting things up and I was like, “Okay, so I know you’ve been warned, but here’s the  thing, this isn’t like squeamishness, it isn’t a problem with needles, it’s not anxiety.

This is a  connective tissue disorder and POTS.” A rapid drop in blood pressure once the blood draw actually  starts, which I’m not even sure is 100% true, that’s just like our best theory right now for  why you lose consciousness during a blood draw.

[Courtney] Yeah, it’s wild because the first time  that that happened I was maybe a preteen and I’d always been super fine with any and all needles  going up.

I’d had a hospitalization where they put in lots of IVs.

Like that had never been  a problem.

But then I randomly fainted, had a convulsing pseudo-seizure, scared the hell out of  my mom because the phlebotomist started screaming 911.

And everyone was, like, panicking and it’s  like, come on now, we are in a doctor’s office, someone should be able to handle this.

And I come  to, out of it just fine.

I mean tired and dizzy, but there aren’t lingering problems.

But it  just sometimes happens when I have blood drawn and has ever since then.

And so, yeah, I can’t  drive myself.

I have Royce come along.

And when I try to tell people– Because I’m also a very  hard stick, my veins are difficult.

For a lot of reasons.

I’m like, “I have little tiny baby  veins.

You need to use the baby needle on me.” [Courtney] I’ve been told I’m valvey.

I’ve been  told my veins roll, if you can even find them, you won’t be able to get the needle in it.

I’ve been told all of these things.

I’m a very difficult stick, but if you still  manage to stick me and you draw my blood, I might faint.

And if I faint I might convulse  violently.

And I always, when they’re scheduling me for blood draws.

I always try to impress this  upon the person scheduling me.

Because I’m like, I cannot stress this enough, you have to give  me the best phlebotomist you’ve got.

Like, who is the best one that works in your office and  what day are they working?

And sometimes they’ll try to shrug it off me, like, “Oh, all of our  people are great.” No, they are not.

I’ve met all of your people and they are not great.

I need  the best one you’ve got.

And you need to warn them that I’m difficult because they need to bring  all their tricks.

They need to bring something hot to warm my veins up.

They might need two  tourniquets.

They need a cold pack for my head.

[Royce] That was a new one we learned, the double tourniquet.

We’re just collecting  those to pass on to other phlebotomists.

[Courtney] Yeah.

And so– And I’m like, “Tell  them to bring all their tricks.” And also, I need to be laying down, like this can’t  be in one of the upright chairs.

If I’m laying down, I have a shot at not fainting.

So lay me down on a bed.

And sometimes, when I go through all these  things, like, no, seriously, we’re going to waste everyone’s time if you don’t  take these seriously, sometimes they’ll be like, “Oh well, we can prescribe you a Xanax  before your appointment if you’re afraid of needles.” Are you kidding me?

I am not.

You did not listen to anything I just said.

[Royce] So yeah, with this one phlebotomist I was  like, okay, connective tissue disorder, veins are tiny and they’re going to move in ways that most  people’s veins don’t move.

That’s– that’s why, it’s not just a hard stick, it’s a thing.

Also the loss of consciousness and possible pseudo-seizure that is connected to POTS.

I don’t  know specifically if either of those things are 100% true.

A specialized enough doctor might  be able to say otherwise.

But it didn’t matter because by saying something very deliberate,  it got the phlebotomist to pay attention.

[Courtney] Finally.

Well, because  this was also after a failed attempt, because you drove with me to an appointment– And  for some reason we can always tell, both of us, independently of one another, we can always  tell when the phlebotomist is not going to be able to do the job.

I can’t really  explain everything about this phenomenon.

[Royce] I mean the last one is  because they were overly dismissive.

[Courtney] Well, she comes into the room and starts  talking to me as if I’m a child, first of all.

She’s like, [sing-songy voice] “Hi, I hear we’re  getting blood drawn today.” And I was like, “Yes, did they warn you about me?” “Yeah, they told  me it might be a little tricky, but don’t worry, it’s nothing I haven’t seen before.

I’ve seen all  of it.” And then I just like, look over into the corner of the room and, Royce, I just see you.

You’re like on your phone, and I just see you start shaking your head.

Because you’re behind  her, she cannot see you.

And I’m like, okay, so Royce also sees it.

This person is not going to be  able.

And she didn’t.

She stuck me several times in several places, and then was literally trying  to draw blood from my foot when she got desperate.

[Royce] Suggested, did not attempt.

[Courtney] Yeah, she was– She was fully, like,  “I just have to ask the doctor’s permission and then I can find a vein on your foot.” And I was  like, “Please don’t bother, [laughs] I will come back.” And so we had to schedule another one.

And that’s when you stepped in and you’re like, “No, please listen, it’s a thing.” And she  actually got the job done.

But yeah, that was funny when you’re like, “No, it’s a connective  tissue disorder.” Then she was like, “Oh…” [Royce] Moving on a little bit, I guess,  in the same vein as that.

One thing you have to just sort of get used to doing is –  we’ve just gone over medical professionals, but – explaining to other people, just ordinary  people that you’re around in group settings, that they need to chill out and stop  asking so many questions if you start having a dizzy spell or need to sit down and  pause for a moment, or something like that.

[Courtney] Well, it’s really helpful to have  you around in those situations.

Because any, like, new person who’s going to be around me long  enough is going to start seeing things like that, and it’s jarring to a lot of people  sometimes.

Like, the extent of it.

And, honestly, medical professionals too, for that  matter.

Because, not only for driving me, but for blood draws and things, like I know  there was one time that I had passed out I must’ve been shaking or something,  cause as I’m starting to come to, I just very faintly heard the phlebotomist say,  like, “Is that normal?” And you were like, “Yeah.” [Courtney] Like, the medical professionals  were asking you if whatever was happening with me was normal, and your confirmation that  yes, this is fine, she’ll be okay in a minute gave them comfort.

But that does happen just with  friends and acquaintances a lot.

And I guess like, yeah, you’re around me more than anyone  else and have been for over a decade now, so you are very used to the things that  might happen and the extent to which they might happen and, you know, it’s  normal and what might not be.

But like, how much of this was just really jarring for you  the first few times you encountered them?

Because I don’t remember you like outwardly panicking in  the way that, like some of our new friends have.

[Royce] I don’t remember ever being  particularly panicked.

I think the first time– I don’t know if you told  me like, warned me ahead of time, or if the first time you needed to be closer  to the floor, and may or may not have, like, lost consciousness, if you were able to get  a sentence or two out before you did so.

[Courtney] I fully remember warning  you before we ever came face to face.

[Royce] That’s what I was thinking.

[Courtney] Like the first time we’re meeting in  person, I was like, it might not even happen, because every day is different, some days  are better than others, but just in case, so you know, this is a real possibility  and please don’t call an ambulance, because this is America and we don’t  pay for those if we can avoid it.

[Royce] Yeah, so expectations were  set.

And the whole thing doesn’t take that much time.

So it was basically just  like, okay, I was told this might happen, I’m gonna wait a little bit.

So  no, wasn’t that big of a deal.

[Courtney] Which is great.

I love that about you.

[Royce] I guess, moving on from there, some  things that might feel familiar to anyone out there if they live with someone  with EDS is having an understanding of the organization of the brace drawer  [Courtney laughs] or the cane closet.

[Courtney] We do have both of those  things.

Although I can’t say you’ve mastered an understanding of the brace  drawer, because I have fully been like, “Hey Royce, go to the brace drawer and  get this particular brace for me,” and you’ll just open it and be  like, “Which one is that?” [Royce] Yeah, sometimes I can pick  them out.

Sometimes it’s not obvious.

Sometimes I’ve just grabbed the drawer and  then like, “Here you– you pick the brace.” [Courtney] You have fully done that.

You have taken the drawer out of the dresser and just carried the entire drawer to me.

[Courtney] And then bonus points you get to  use my braces and canes if ever you need them.

Which normally you don’t take me up on  braces, every now and then you might be like, “Oh, my elbow is acting up from that  old dodgeball injury,” and I’ll be like, “I have elbow braces.” And you’re like, “Nah,  I don’t need it.” But then you start googling your symptoms and realize you probably have  some kind of elbow strain injury and you get a list of exercises to do with them that  requires like a long stick and you’re like, “Aha!

We have many of those.

Let me use one of  your canes to exercise my old dodgeball injury.” [Royce] You know, we learned recently  that the kind of brace I would use for that isn’t the same kind of  brace that you use for your joints.

[Courtney] Well, we know that now.

[Royce] Yeah.

[Courtney] We didn’t know that then.

Mine are far  more heavy duty than you need.

Turns out.

Shocker.

[Royce] And your braces are  usually more for protecting the joints than dealing with muscle problems.

[Courtney] Do listeners know that you  used to be an excellent dodgeballer?

[Royce] I don’t know.

You bring it up every now  and then.

I used to work at a company that had a dodgeball court in their basement.

There was  a citywide like corporate challenge thing that would happen every year and this company would  always host the dodgeball tournament for that.

[Courtney] And I loved that you still worked  at this company for a period of time after we first got married because I would get to  witness these like dodgeball tournaments.

And the level of grace and majesty you brought to  the dodgeball court cannot be overstated.

Long flowing hair as you move just so quickly.

Sharp  and quick but somehow exceedingly gracefully.

It was a shock and a delight to all.

Too bad about  that elbow injury that is now giving you problems.

[Royce] Yeah, it’s technically the elbow  and the shoulder, but the elbow’s worse.

[Courtney] Mm-hmm, which kind  of elbow did we decide it is?

[Royce] The closest thing is  probably pitcher’s elbow.

[Courtney] Because there’s tennis elbow, golfer’s elbow and pitcher’s elbow, and  you probably have at least one of those.

[Royce] Yeah, the exercises  I have been going through are actually for baseball pitchers trying  to rehabilitate strains on their elbows.

[Courtney] Who normally do these  exercises with a baseball bat, but Royce is just using my walking canes.

[Royce] A baseball bat would actually be more  comfortable because, since it has a slow curve, you can put your hand at the part that’s  comfortable.

The canes that I’ve tried it with are smaller than I actually need, so my fingers  don’t line up quite right.

But we’re figuring that out.

As I mentioned earlier, a part of my own  research recently has been trying to figure out if I have some oddity going on, whether it’s like  some joint pain or a muscle problem or something like that or something dietary.

Doing some quick  research and then experimenting and seeing if it helps and just repeating that process.

But  let’s see… Going back to the main topic at hand, another common experience people who live with  people with EDS might have is usually knowing what you make for breakfast.

[Courtney  laughs] Even if I’m not in the room.

[Courtney] Royce, how dare you?

[Royce] Particularly if it’s like cereal.

[Courtney] Not the cereal.

[Royce] There’ll just be a  trail of, like, Cheerios.

[Courtney] Okay, a trail is a little much.

[Royce] There will be some directly  around where you are pouring, but then also some that have  rolled away in the vicinity.

you were just gonna read me like  this.

I really can’t explain it.

[Royce] Going on to again threads of  people discussing it.

Some different people have different theories on what I  heard a couple people call the dropsies.

[Courtney] The dropsies!

[Royce] But one common thing people talk  about is poor proprioception.

And then there’s also just joints going out all the time.

[Courtney] Yeah.

[Royce] Or weakness in grip strength,  which might also be due to joints just going out all the time.

Because you  have a lot of joints in your hand.

[Courtney] Yeah, and they don’t  work very well most of the time.

[Royce] No.

[Courtney] Well, because that’s the thing.

Like  sometimes I will drop things fully because of an injury, something gets dislocated.

Even if it’s not a full dislocation, something might roll.

But like those are  times when I’m fully aware that I dropped something.

And you’re normally also  fully aware that I dropped something, because if you aren’t in the room at that  point, that’s normally a loud enough one that you’re aware something happened.

But like  there are times when you started the first, like, couple years we were married, when you just be,  like, finding pieces of cereal in places.

I was so baffled because I could be so certain that I  did not spill anything.

I did not hear anything, I did not see anything.

I searched the area  after pouring a bowl of cereal and I’m like, nope, don’t see anything on the floor, on the  counter.

And you’d somehow still manage to find like a miscellaneous Cheerio somewhere.

And I’d  be like, “How?!

How…” I truly don’t understand.

[Royce] I don’t know, but it’s consistent.

Speaking of dropping things, yeah, sometimes I do hear it or I am around  when it happens.

There’s also the times when it’s quick, there’s a spill and  I need help cleaning it up real fast.

[Courtney] Oh yeah, that happened in a real  big way recently, and I’m still very sad about it.

Because I poured, on accident, an entire  bottle of ink on the floor in a carpeted room.

[Royce] Yeah, we’re still working on that one.

[Courtney] Ow… [Royce] I don’t know.

[Courtney] It’s never coming out.

[Royce] It’s at least lighter now, but  we need to keep trying to go over it.

[Courtney] That’s what I get for writing  with a quill and ink in a carpeted room.

I should have known better.

I do it all the  time and I have never actually dropped ink yet.

[Royce] Yeah.

[Royce] I learned that if you’re going to be using  a lot of hydrogen peroxide to clean something, that you should wear gloves, even if  it’s the normal store-bought 3% stuff.

[Courtney] Oh yeah, you fully  chemically burned yourself.

[Royce] Oh yeah.

[Courtney] Why did you do that?

[Royce] It was a very light chemical burn because I noticed it starting to sting and  discolor my fingers early enough.

[Courtney] Don’t do that.

[Royce] I didn’t think it was going to be a  big deal, but this ink was really stubborn.

[Courtney] PSA: next time you’re cleaning  ink that you spilled on the carpet.

[Royce] Yeah, if you notice your  fingers starting to go white, stop.

Go wash them off with soap and water.

[Courtney] So there’s like, yeah, there’s the  two kinds of dropping.

There’s like the obvious injury drop, there’s like the stealth drop where  little pieces of something will just get somewhere and nobody has any idea how that happened.

But  the other thing that no one has any idea how it happened are like the weird ones where you just  fully, like, throw something unintentionally.

[Royce] Yeah, it’s like– Well, you tell me,  is this a situation where you are actively moving and then a joint goes out, so  like the thing carries your momentum?

[Courtney] Sometimes.

But sometimes  the joint doesn’t even go out, sometimes it’s just like a muscle spasm or  a twitch or something.

So I’ll just be like, oops!

Oops, I threw it across the  room, don’t know how.

Wish I didn’t.

[Royce] Yeah, I guess that’s a good segue  into a division of, like household labor that is atypical or different than what you  tend to see in most relationships.

Where, because your joints don’t always cooperate in a  variety of ways – because of the chronic pain, because of some other things like that – the  way that we section up and divide out all of the various things that we have to do in life  is a bit different than what most people in relationships do.

And that is something that we’ve  had to be, like, aware of and intentional about.

[Courtney] Yeah, because the way you kind of see  it, like, when it comes to just organizing and running our life, you kind of conceptualize our  hours and energy and ability as like one unit and you tend to think, like, “Well, if this is  a thing I can do faster and easier,” than I can, then normally it’s not, “Oh well,  that’s not fair, because I just did X, Y and Z already.” Normally you’re like  this is the most logical division of… [Royce] It makes more sense to do  it that way.

Particularly because, like, overexerting yourself has consequences.

[Courtney] Yeah.

[Royce] For anyone.

Whether you are burning  out or exhausting yourself, either mentally or physically, or dealing with the buildup of chronic  pain, and if we weren’t so deliberate about how we divided things up and how we chose to do certain  things, all that would happen at the end of the day is that we would be able to do less.

Because  that would cascade.

Like if you spent your time and energy doing things that you are very either  very inefficient at doing or that cause a lot of additional pain, all that would mean is you could  do fewer things later.

And or it could be to a point where you’re injured or are unable to do  things for a while, which just means I would have to do more then.

So it makes sense for me to just  do the things that I can do more easily upfront.

[Courtney] Plus, yeah, just having more time to  like do things together, I think is a big part of that logic also.

Because, like, if I spend  a full day doing chores, I will be wiped and not be able to have, like, quality time in the  evening.

But you can spend half as much time doing the same chores and then we can have plenty  of time together at the end of the day.

And I just really appreciate that that is a value that you  have.

And the way you see our combined energy as sort of our same household unit and are willing to  find the most logical ways.

’Cause, I mean, we’ve talked about this in like a division of labor  episode before too, where, like, my skills are far more suited to making phone calls.

So things  like making appointments, scheduling things.

[Royce] And those are things that if you  do them, they won’t stress me out and I won’t put them off for too long,  if I just don’t want to do them.

[Courtney] Exactly.

Has there been anything  over the years that has been like a big surprise or change to you?

Because  you tend to, at least on the outside, just accept things pretty quickly and naturally,  but like I had never walked with a cane until a couple years into our marriage.

So, like, things  have changed and my symptoms have fluctuated.

[Royce] I don’t think it’s really  caused that much of a difference.

I think it is a good lead into something else  that I jotted down to talk about, though, was needing to adapt our lifestyle to sudden  flare ups of allergies or other intolerances.

[Courtney] Oh… Oh, that’s a good one.

[Royce] That’s more MCAS than EDS.

But we think.

But yeah, we don’t have a standard coffee pot anymore.

We moved into a house with a gas stove  that we try to minimize the usage of.

There are just some things like that.

Are you still allergic  to hand soap?

Did that go away?

Have you tried?

[Courtney] That, I think, is gone.

I’ve  been testing the waters lately.

So yes, for those keeping track at home,  I have not actually been diagnosed with MCAS.

Right before the pandemic  hit, like the month or two before, I was seeing a specialist who was going to test  me for it.

But then that pandemic happened and so I stopped going into doctor’s offices for a  very long time.

And now I don’t think that doctor even works at that place anymore, or they’re  not on network anymore or… It’s all a pain.

[Courtney] So the allergies I do have or have  developed, one was dust.

I think that was the biggest one.

The dust and gas kind of coincided  with each other because my breathing issues like really really flared up for a time.

So we had  to make some accommodations to that.

I do have a dust allergy, general, just air quality things.

We were looking at.

I randomly broke out in hives one day the minute I walked outside when it was  very hot and the doctor was pretty sure that that was in fact caused by the heat.

So sure,  allergic to the heat.

Sounds about right.

That was one of my migraine flares when I was a kid was  extreme heat.

Developed a rather severe allergic reaction to over the counter melatonin.

And then  liquid hand soap was a very, very weird one, unexplainable.

Except maybe for Mast Cell  Activation Syndrome.

Maybe that’s the explanation.

[Courtney] And just a couple months before  the pandemic hit also, where I would wash my hands with liquid hand soap and it would just be  burning, searing pain.

And I still have these wild pictures from it of what my hands looked like.

Like bright, angry pink.

Which is not a color I think my skin has ever been.

And I couldn’t wash  my hands even at, like, public bathrooms.

Like, this is when I was performing at Hamburger Mary’s.

I would fully have to just bring hand sanitizer with me, because I couldn’t use the soaps in any  of these places without my hands acting up.

And for our house I tried just some bar soap where  it did not act up.

So we were using bar soap for a while.

But now that we’re starting to  occasionally leave the house very carefully, I have a couple times tested the waters and  tried some liquid hand soaps.

And I have not had any reaction to anything yet.

So hooray,  that one’s gone.

That was an inconvenient one.

[Royce] Yeah, liquid soaps are technically  detergents, so they have a different composition than hand soaps and because of that  are harsher or more likely to cause irritation in people.

So it makes sense that you were  able to fall back on hand soaps or bar soaps.

[Courtney] Yeah.

Well, you mentioned coffee too.

[Royce] Which I have no idea if  that’s related.

That wasn’t as jarring of a reaction, I don’t think.

That seemed like a more gradual thing.

[Courtney] Well, it took a long time  for me to realize what the issue was, because I never had that to coffee outside  of the house.

And there was like a business breakfast meeting I would go to a couple times  a month, and I would always feel just incredibly nauseous after that meeting.

To the point where  I stopped ordering breakfast when I went there and I would just drink coffee and I would still  feel incredibly nauseous.

So I was just thinking, you know, I’m not a morning person, I shouldn’t  be waking up this early and leaving the house and driving this far and doing all this  because clearly I didn’t get enough sleep last night.

And I just thought it was sleep  related.

But this was happening regularly, twice monthly for a couple of years, until I went  to Sweden and got, like, a coffee on a train car and felt exactly that same type of nausea at a  very different time of day.

And then I went, oh, I think it’s the coffee.

But why is it the coffee?

Because I drink coffee at home every single day.

[Royce] And the difference there was the coffee  we were drinking at home was dark roast, and the coffee you were drinking in other places was  either light or medium.

The lighter the roast was, the more of an issue you seem to be having.

You have some speculation as to why, but that’s another unconfirmed one at this point.

It’s just  mostly you can’t drink that stuff, so you don’t.

[Courtney] Yeah, simple as that.

Like, since I’ve  been avoiding it, I haven’t had that issue again.

[Royce] There are a few things about lighter  roast coffee that can cause some kind of gastrointestinal problems for some people.

But there’s more than one thing.

There’s more than one difference between light roast and  dark roast that could be responsible for it.

[Courtney] Yeah, which was wild.

And yeah, we don’t even drink coffee at home anymore,  because now we make espresso like snobs.

[Royce] Yeah, that took us a little bit  to go all in on.

I think it was worth it.

It’s nice that– I mean the reoccurring cost of  coffee is purchasing the beans, particularly if you’re trying to get good beans from, you  know, a local shop around you.

They can be a bit pricey.

And because espresso is pressurized  they last longer.

You get more caffeine per bean.

[Courtney] More ’feine per bean.

[Royce] And the manual, like, lever action press  that I did some research on and picked up, wasn’t all that bad.

Particularly considering,  you know, it has no electronic parts.

It’s a pretty simple mechanical thing.

That one  I’m glad I got, because it’s– you can’t clean the internals of coffee pots very well.

So it’s nice to have something that you can actually take apart.

You can take apart the  parts, the small canister that the beans sit in that the coffee actually goes through  very easily.

And that’s nice, just knowing a lot more about how many things build up in  machines that have tap water go through them.

[Courtney] See, my strange  allergies and sensitivities led us on a path to a higher quality of coffee.

[Royce] Yeah, I will say to anyone else who  has been curious about getting more into it, the one big point of hesitation I had  was actually spending the money to get a quality coffee grinder.

And I have to say, if  you’re really getting into it, like, just do it.

It’s both necessary and useful.

Because we  messed around with a cheap little grinder from somewhere and it wasn’t consistent enough and it  took so much longer.

It was so much more effort.

[Courtney] You suffered through  that for a long time.

Our good grinder is relatively recent, actually.

[Courtney] You were so excited when that was coming  in.

You were like, “Oh, my grinder’s coming!” [Royce] Yeah, part of that was I had  done so much research on this.

But yes, it is worth it.

Just go all in, go for it.

[Courtney] But yeah.

And that’s– I mean,  that’s something that isn’t necessary, that’s something that we decided to do based  on having limited options.

But primarily, you made a lot of changes with the allergist  recommendation, with my dust allergy and how bad my lungs were getting there.

Because we had to  make a lot of changes in the house to accommodate that.

And you did pretty much all of them because  I was very allergic and not breathing very well.

[Royce] Yeah, there are a few of them.

One was  just, you know, making sure we get the hard to even if you aren’t having asthma issues.

But  we did have to do some research and get some specialized bedding to, you know, keep from dust  in the mattresses or pillows from coming out.

I keep a little like handheld squeegee  in our shower, because I found that if, when, when I’m done showering, if I  just really quickly run all of the like beading water down into the drain,  the bathroom dries up so much faster and you have a much lower chance of mold.

Which mold was also a trigger for you.

[Courtney] Is that why you’ve been doing that?

[Royce] Yeah, it’s to prevent mold in the bathroom.

[Courtney] Oh, that’s so sweet.

[Royce] You didn’t know that?

[Courtney] I’ve been seeing you do that recently.

You have never once said aloud that  that is what you were doing, or why.

[Royce] I’m pretty sure I have...

[Courtney] I don’t think so.

I don’t think that happened.

[Royce] It is amazing how big of a difference  that makes too.

Because when you just let the room dry off on its own, it takes– it’s  humid for a long time.

But just taking the standing water and getting rid of  it lowers the humidity so much faster.

[Courtney] Fascinating.

[Royce] Being better about gas was also not too big  of a deal.

It’s an expensive change to actually do right.

We haven’t fully done that yet, but  the little induction cooktops that you can just get wherever that are, you know, maybe $100,  they work great.

I’m really happy with them.

[Courtney] You love that thing.

[Royce] Yeah, I’m– After having one for a while,  even, again not a very sophisticated one, I am firmly in the belief that everyone  should switch to induction as soon as they are financially able to.

The industry should  switch.

If you’re stuck on gas for the time being, make sure it’s ventilated.

Use the whatever hood  is built into the microwave above your stove or whatever.

But more and more studies are coming  out about how bad having really any kind of gas, anything in your home is.

But it’s still going  to be a while until things fully transition over.

[Courtney] That is something that I hadn’t  considered until you talked about these two things close together.

But you’ve gotten really excited  about things that were essentially changed or added to our life to accommodate me, and you’ve,  like, made a hobby of it.

Like, I don’t think you would have started making espresso on your own  if my coffee options weren’t already severely limited and we were having that conversation.

And I do think you probably would have landed on induction tops on your own, just for the sake of  efficiency and because the research you’ve done, but because of my lung concerns and air quality  in the house, that became like an emergency that you expedited and really wanted to make changes  as soon as possible.

And now you love that thing.

[Royce] Yeah, there’s definitely an impetus there.

I might have gotten there to some degree.

I mean, you had been saying that you would like to  have espresso at home one day and that’s just a big– that’s a big thing to research.

Because  most serious, like, full espresso machines are really expensive.

Like I said, I found a manual  lever action one and then read enough to realize, okay, this isn’t going to be so strenuous or so  time consuming that I’m going to hate it.

It’s actually pretty easy to do.

And tried it and was  right that it’s really not that big of a deal.

It’s not that much more work than making coffee  or, you know, grinding your own beans or doing whatever.

It’s just a few minutes of a morning  ritual, so it was pretty easy to switch over.

[Royce] I have occasionally gotten into air quality  research discussions or threads, things of that nature.

Because it’s something that has been and  is going to continue getting worse and worse, partially just because of pollution in general,  partially because household efficiency requires you to have a house that reduces air leakage,  because you need better insulation.

You need to keep– you need to keep the right temperature of  air in your house and the wrong temperature of air outside of your house.

That also means that you’re  going to be recycling more air.

That means that if you have any pollutants they’re going to build up  more.

So newer houses that are insulated better are going to have more air quality issues.

And  this gets worse if you’re working from home all the time, if you’re at home all the time.

So doing  things like, again, burning gas in your house can turn into big, long term, sometimes subtle, health  complications.

And it is exacerbated by the times that we live in.

And I have looked into some of  the subtle symptoms of, you know, poor air quality and sometimes they do just manifest as difficulty  focusing, difficulty sleeping, brain fog, inability to concentrate.

You know things– There  are some mental issues like just chronic fatigue, things of that nature that happen from just  breathing in pollutants and things like that.

[Courtney] Yeah, it’s hard to pin down things that,  like, could be caused by anything or nothing.

[Royce] And there have been times when I’ve  been feeling off and I couldn’t quite tell, is it just anxiety, is it stress, am I  feeling burnout?

Or is it some kind of health thing that is going on, whether  it’s, you know, dietary or or, again, air quality.

I’ve gotten into those  air quality discussions as a part of something that I was feeling was wrong at the  time.

And I think that me looking into those, either for my own interest or to try to figure  out something that was off with me, and then you having issues coincided and it was enough  of a push to actually start doing something.

[Courtney] I mean honestly, pro tip for life:  if you are someone who wants to have long term cohabitating partnership, make it inter-abled.

I am not at all joking.

Because so many of the changes we’ve made have been very quick because  I needed it for my health.

It needed to be a very quick, sharp change.

So then you aren’t  dragging your feet doing it, because now it’s very much an accommodation necessity.

But  then we have Royce here who is much healthier, so if anything is possibly going wrong, just even  if it’s just a little deficient on this vitamin, you notice those changes but you also– if you  try to make a change, to add or remove something, to try to fix the issue, the issue resolves  itself very quickly.

So you have a very quick turnaround of like, “Oh yeah, I made this  change and it got better.

So that was the problem.” Because things aren’t quite  as clear with me when there’s an issue, because a lot of things are just internal,  because my connective tissues don’t work.

[Courtney] So not– not everything is an external  issue, it’s just external issues exacerbating it.

So we’ve got the big major lifestyle changes  that need to happen because of me, but all the little subtler things you are just like such a  good guinea pig for.

Because you get such quick feedback and it’s not complicated by other things.

So that’s really the way to do life, I think.

[Courtney] Because a lot of people  are very put off by, or confused by, inter-abled relationships.

And like I  can’t tell you how many people, like, absolutely believe that you are a saint  just because you live with me and do extra chores.

And like, do these things  to, like, help accommodate my health.

[Courtney] I know in a previous episode I  just talked about the fact that you, like, walk at my pace and don’t walk ahead of me.

And  I know there were other listeners of ours who are also slow walkers like me, for their own unique  medical concerns, who were like, “Yeah, I’ve never had anyone who will walk at my pace.

Everyone  just leaves me behind and walks faster because they think it’s annoying to walk slower.” So  little accommodations like that.

I don’t know, I guess where do you think that comes from?

Because  it doesn’t feel like it’s ever been a strain or a stress or a problem for you to welcome me into  your life or to build a life with me.

Whereas other people are like, “Well, I could never do  that,” or you’re such a saint for doing that.

[Royce] Well, on things like walking at group pace, I don’t know why people can’t do that.

I  don’t know why people get so weird about walking speed.

I also wonder sometimes  if people underestimate their capacity for change when they don’t actually have to.

Like, if that person that could never live with someone who had a disability had a child that  was disabled, would they change pretty quickly?

[Courtney] Oof.

[Royce] I know that’s not universally  true.

Some parents suck, but.

[Courtney] Oof, I mean, but yeah, an excellent  point.

This might be an odd or fun thought experiment, because everyone gets used  to their own normal.

But we touched on a little bit earlier where, like, other people  around me, newer people who haven’t seen me with a dizzy spell or haven’t seen me when I,  like, convulse a tiny little bit, get really, really shocked and really concerned.

And that is  just, like, so normal to you.

So what in, like, an average day from waking up to going to bed,  can you explain, or try to, to the listeners what you might see or what might happen?

That  is just not normal for most people’s every day.

[Royce] Well, I’m trying to think about what my day  to day is, as it correlates, because oftentimes I try to frame what I intend to do for the day in  a loose list that is somewhat scheduled.

What I try to do for a day is figure out what has a hard  time.

Like if I have a work meeting or something going on, what is something that needs to be done  at a particular point in time, what are the things that I need to do, and then how do you fit into  those things.

And some of that is like meal time, meal prep.

Some of it’s you have something that  you need to get done, but it would be useful if I was around at the time that you were starting to  do that, so I could help you get set up if it’s, you know, involves getting ready for something,  or if something needs to be moved.

There are a variety of situations where, if you’re about to  go do something, it’s useful if I’m around.

So I try to sort of get my idea of a day scheduled  and then frame the pieces into it and keep things loose for the miscellaneous stuff that  I need to do around the house here and there.

[Courtney] Moving things.

An excellent point.

Because some things are very  hard for me to move around.

[Royce] That’s the thing where you can have joints  that just go out.

And the stuff needs to get done.

So that needs to be accommodated for.

But I mean,  you get dizzy basically every time you stand up.

[Courtney] Yes.

[Royce] You don’t really faint anymore.

You haven’t done that in a long time.

[Courtney] Yeah, I rarely fully lose  consciousness.

There will still be bad ones where it’s like I need to get to  the floor immediately or else I will lose consciousness.

And that’s a quick drop,  but it’s at least somewhat controlled.

[Royce] I barely even notice the joint  pops or subluxes anymore.

[Courtney laughs] Those happen all the time.

Other  people call them out more frequently.

[Courtney] Yeah, it’s just background noise to  you now.

Well, sometimes you have to pop me.

[Royce] That’s true.

I pop your back fairly often.

[Courtney] “Hey, Royce, pop my back.”  Sometimes if my big toe is bad, sometimes you’ll just grab it and swing it around [Royce] There was a time period many  years ago where you were asking me to do that more frequently.

And I think it  was because one or both of your big toes got subluxed for a long period of time.

Like  you couldn’t get it perfectly back in place.

[Courtney] Yeah, that did happen.

[Royce] And so we were fiddling with it.

[Courtney] Back when I was  still teaching dance lessons.

[Royce] Yeah, that would have been it.

[Courtney] But that was so goofy too, because it wasn’t out so bad that I  couldn’t keep living my day to day.

[Courtney] It was painful and annoying.

And so that  was a goofy period of time, because you would just grab my toe and we were just like watching tv or  something, and you’d just like to fuck around with it, just like whipping it around, moving it in  circles, just hoping something might slide back.

type of movement that would pop a few times  and would seemingly help it a little bit, but it wasn’t going fully back into place.

[Courtney] [chuckles] I forgot about that.

[Royce] Oh, sometimes I forget how some people  get kind of grossed out about hypermobility.

[Courtney] Oh yeah, very squeamish.

[Royce] Yeah, because that’s something that’s never  bothered me.

Like some people get a very visceral negative feeling by looking at a contortionist,  for example.

And I do have some hypermobility, it’s just very isolated.

So I don’t know if  it’s because I’ve always been able to, like, bend my fingers or wrists in ways that most  people can’t that that never bothered me, but it’s– I’ve never had that reaction.

[Courtney] Yeah, it’s really  only your small joints that are hypermobile.

Like you don’t get the big ones.

[Royce] Yeah.

[Courtney] Like elbows, knees, hips, back.

But your fingers?

Silly, silly fingers.

[Royce] I mean, those are the  big day to day ones.

It’s a lot of joint pops and things coming  out of place and the dizzy spells.

[Courtney] Yeah.

[Royce] Which, I guess those are kind  of funny too around other people, because you’ll stand up and have a noticeable  dizzy reaction and someone will say, “Did you stand up too fast?” Or something  like that.

And it’s like literally always.

[Courtney] No, I can stand up so slowly.

I could spend 20 minutes standing up  and it would still happen.

[Royce] Sometimes you get dizzy when  you, like, sit up in bed or something.

[Courtney] Yeah.

[Courtney] It’s unfortunate.

But yeah, there’s  different levels of those dizzy spells too.

Like, sometimes it is just very much like as if the  average person did just stand up too fast, like a little head rush, like, ooh, and  then we’re back to normal.

But sometimes it’s a really big deal.

And sometimes I’m  a little bit shaky.

And if I happen to be, like, holding something, like if I’m holding  a glass, like a drink or liquid or something, and that happens to me and you’re anywhere in  the vicinity, I’ll just be like, “Oh, take this.” [Royce] That is one thing when you’re walking out  of a room, I do have to look back over to see if the– if you were carrying a bunch of things while  you got dizzy.

Generally you don’t, but usually I glance over and I’m like, okay, you have one thing  in your hand and it’s small, it’s probably fine.

[Courtney] You are very swift about moving  and grabbing something from me when I am dizzy and possibly about to drop it if  it’s breakable or heavy or spillable.

[Royce] That’s funny when, occasionally, when  we’re around some of our closer friends who are just around the house, if that  happens.

Because I just walk over, grab the thing, set it down and then walk  away.

And our friend will be by, like, looking at me and you, like, “Are you going  to do more than that?

Is Courtney okay?” was abnormal.

But this happens multiple times  a day.

That’s very true.

But you know, yeah, just very quick to get the thing, set it down, do  what you need to do, give me the second I need.

It’s all that dodgeball training, really.

Why you  move so deftly to my aid.

It is very funny too, because, like, any of our friends who do spend  enough time with us, who see those enough times, also start to learn, like, when something is or  is not a problem.

But I feel like seeing both of us in the same place, you give people an added  level of confidence.

Because if someone’s only around me, and I tell them repeatedly like, “Don’t  worry, I’m fine.

I’m fine, this isn’t a problem,” etc.

etc.

There’s always going to be a little  bit of, like, “Are you fine?

Are you?” Because I– [Courtney] And I mean, in all fairness, I don’t  even think that’s in an infantilizing way.

I think a lot of people just self minimize their  own needs.

But when it’s the two of us together, and they see things like that where I’m having  a dizzy spell and maybe you grab the thing I’m holding and move it to safety, but then you aren’t  like doting over me because you don’t need to be, I think that is really what helps new people  click.

Like oh okay, Royce is not panicking about this, therefore, this is probably fine.

Because  I do see, like, the trajectory of new people and how quickly they do understand that.

Because,  like now, now there’s a friend of ours who we see together pretty regularly but also is just alone  with me a lot, and I did actually fully faint on him.

That was the last time I lost consciousness  and that was last summer, maybe fall.

[Courtney] So it’s been a good run so far of not  fully losing consciousness.

So he did see that he has seen some more aggressive spells.

And for a while he seemed very concerned.

But then when he started seeing your  reactions or lack of reactions to things, now it gets to a point where if we are  in a group setting with other people, and I’m having a spell, now he is the one  who’s telling other people, like, yeah, she’s fine.

And it’s like, that’s great.

I love that growth and how quickly people, you know, learn to identify these things.

Because  I remember, like not too long ago, you were like getting a little nervous when things like this  were happening.

It’s a learning curve.

Is there a weirdest thing?

Can you think of the weirdest  thing about being married to someone with EDS?

[Royce] That we haven’t already covered?

[Courtney] Well, even of the ones we did like,  is there one that you think is the weirdest?

[Royce] I don’t know.

I think weird  is mostly a matter of perspective, like how far is this off from  the norm that you currently know?

[Courtney] Yeah, and arguably my genetic  disorder isn’t even the weirdest part of me.

So, yeah, I think that’s probably going to do  it for today.

We will leave you off, as always, with our featured MarketplACE vendor: Vidramon.

Queer, a-spec teacher, specializing in cute and happy fan art and stickers.

And these stickers  are very, very cute.

I like them so much.

[Courtney] There are Pride ones that are like  ace and aro colors.

There are more general Pride colors as well.

But I’m personally obsessed  with these adorable little slime creatures.

Just a little dollop of ooze.

They look so cute  and happy.

You can get them in Pride colors.

So you know, I had to get some ace ones myself.

And as far as fan art goes, there are several different options.

There’s Dragon Quest, there’s  Digimon.

You can even get ines and art books.

But seriously, if you ask me, you definitely  need to look at these Pride slimes.

I think they are absolutely adorable and I love mine.

So, as always, we are going to put the link to our featured MarketplACE vendor in the show notes  on our website, as well as the description box on YouTube.

And, as always, thank you all so much for  being here and we will talk to you all next time.