March 10, 2025 • 60 mins
In this episode of I’ve Got Guts!, we sit down with Jessica Maldoff to discuss her experience living with Granulomatosis with Polyangiitis (GPA), formerly known as Wegener’s Disease. Jessica shares her journey from diagnosis to treatment, the challenges of managing a rare autoimmune disease, and how she continues to navigate life despite the obstacles. Tune in as we explore the impact of GPA on daily life, the importance of advocacy, and what she wishes more people knew about this condition.
#IveGotGuts #ChronicIllness #GPA #AutoimmuneWarrior #SpoonieLife
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hello, I'm Stefanie.
(00:03):
And I'm Lauren.
And this is I've Got Guts.
A podcast about living and thriving with chronic illness.
Let's be real, it is really hard.
But it doesn't have to be.
You are not alone.
With this podcast, we want to create a community and a space to be able to talk about the tough
stuff and laugh along the way.
(00:24):
The idea for this podcast stemmed from us trying to find one for ourselves to listen
to, but not being able to find anything that didn't make us more sad or frustrated.
Our goal is to talk about the hard stuff, but also talk about how to get through it,
be positive, have a full and productive life, and of course thrive.
But before we get started, just so we are clear, we're not medical professionals.
(00:44):
We are just here sharing our personal experiences.
All right.
Thorns and roses.
Thorns and roses.
I'm going to go first.
You go first.
All right.
My thorn.
You go first.
All right, my thorn.
You were with me with my thorn this week.
So we went to a hibachi restaurant for dinner to celebrate Anthony's birthday.
(01:09):
And I called ahead of time to make sure they could do gluten free, right?
Because usually hibachi does not do gluten free.
Yeah, you knew they can do gluten free hibachi.
Right.
But could they give me something else so I could still get the experience, we could come
and celebrate?
And you know, poor Sean.
He never gets hibachi and he loves hibachi.
So I call ahead of time and they are like, oh yeah, we can do sushi.
(01:32):
No problem.
We'll prep sushi for you, you know, whatever you want in a separate area.
The chef has no problem doing that.
I'm like, yay.
And I love sushi.
And I also, I was thinking maybe this might be a new place for me to order sushi.
Right.
Because there's not a lot of places around.
Yeah, it's kind of tricky.
So we go, we get there and we sit down and I was like, I could just tell.
(01:55):
I asked her and I said, you know, I'm gluten free.
She was not very kind.
I'm like, I'm gluten free.
I called ahead of time, I have celiac disease that you guys can make the sushi, you know,
be gluten free, no cross contamination.
She's like, oh no, we definitely can't do that.
Yeah.
What?
Like it wasn't even.
Yeah, it was kind of shocking.
(02:15):
Yeah, I'm sure or let me check.
It was like, no, we can't.
They soak, I guess the seaweed or the rice in soy sauce.
They were soaking something in something.
So I'm like, what?
She's like, well, did you talk to a young girl on the phone?
I'm honestly, I couldn't tell you who I talked to, what her name was.
Note to self, get names from now on.
I was like, what?
(02:36):
So I was like, told her what my conversation, they said they could do it.
And she's like, well, I guess I can check.
She's like, we do the hibachi, you know, we can prepare it in the back and give it to
you.
So I'm like, oh boy.
So she goes to the back to the kitchen, comes back with our drinks.
And she's like, yeah, no, can't do sushi.
I'm like, all right, I'm all set.
(02:58):
She's like, oh, we could do hibachi in the back.
I'm like, no, I'm good.
Because you know, when you just get that gut feeling.
I can tell you got the ick.
Yes.
Yes.
As soon as her like her vibe and just her, how she handled it, I just knew in my belly,
I'm like, I'm all set.
And if the celiacs and gluten free people listening right now, you know how it feels.
(03:19):
I'd rather enjoy my night and just enjoy my wine versus have the fear of getting sick.
Am I going to puke in two hours?
Right.
Like, are they really going to be able to do it?
Because if they told me wrong on the phone the first time, I feel like I lost their trust.
So it was definitely my thorn.
But even though I could not enjoy any food, it was still such a fun night.
(03:39):
It was a really good hibachi chef.
It was a good hibachi chef.
All right, Room, what's your thorn?
My thorn is just a tough one.
Like I've I've been teaching for, oh my God, like 18 years now.
And I've had a few times in my career where I felt defeated, unheard and genuinely angry.
A few.
Like I can count on one hand.
(04:00):
And this week was one of those times, unfortunately.
And it's really just taken a huge toll on me.
And I've spent the majority of the week stressed, crying and or completely zoned out because
it's the only thing my brain has allowed me to think about.
Like, I can't tell you how many times this week Anthony's been like, what are you there?
(04:20):
What are you thinking about?
Are you OK?
And I'm like, sorry.
Yep.
Just it's the only thing I can think about.
So it's just it's hard sometimes as teachers, like when we feel like our voices aren't heard.
Just takes a toll on you.
It does.
And, you know, we work with kids and it's always about what's in the best interest for
(04:41):
them, you know, when you're not feeling heard as you're advocating for your kids, students,
whoever it may be.
It's tough.
It's our students are our babies and it's hard.
It is.
It is.
I was just saying to Sean the other day that literally I spend probably we probably spend
more time with our class than they do with their families.
(05:04):
Right.
During the school year.
And we're together six, seven hours a day.
So it's true.
Not a good sign.
Casting the vision for a better week for you, Room.
I hope so.
All right.
Rose.
You start.
OK, I'm going to start.
So today we were in Syracuse for a hockey game.
(05:28):
And this was just such a bright spot in our weekend.
And my mother in law, my father in law and my sister in law came and surprised Connor
at the game.
So because Syracuse is about halfway, not even half maybe a little bit further for them.
But yeah, so they came and they haven't seen him yet play this game or play hockey this
(05:50):
year yet.
So they came, they surprised him and Connor, like the look on his face, I went down and
like, look who's in the stands and like Grandma, Mick and Coll like waving.
And it was just he was so excited.
So we so appreciate them, you know, coming out and surprising him and cheering him on.
But really, my real Rose, personally, my mother in law just got back from Ireland and she
(06:16):
bought me, are you ready, Room?
An Irish sweater that I've been having my eyes on for years since she actually bought
one for Coll.
I love a good sweater.
Oh, but it's like one of those sweaters with the buttons.
So it can be like a shawl, but it could be like a poncho situation, but then it can be
like a regular sweater.
Shoot, I need one.
I mean, well, Chris, here you go.
(06:37):
Gotta go back to Ireland.
Next time you go to Ireland, Rooms going to need a sweater.
So that was definitely my Rose.
I was so excited.
I've been watching Coll wear hers for a long time.
I'm like, I really like that.
I want one.
I'm so glad you finally have one.
Yeah, so that was my Rose.
What about yours?
So my Rose is obvious, so we were supposed to celebrate Anthony's birthday last weekend,
(06:59):
but we couldn't because I was recovering from my egg retrieval.
So we moved the birthday celebration to this weekend and we did an escape room with our
friends Keegan, Taryn and Matt and we have a new record.
We made it out with 11 minutes to spare.
You were like so zipped up about this.
I'm so proud of you guys.
I mean, we did have to use all the hints, but that's okay.
(07:21):
That's what they're for.
It was a hard one, it's a casino heist.
I love the casino and I love poker.
But I don't love it.
There's a poker table in there.
I don't like escape rooms.
I know you're just not a big fan.
You would have liked this one though because it had everything to do with poker and everything.
So we did that and then we went to the Hibachi restaurant.
(07:43):
All right, let's get into it today.
We have a nice little interview set up for you guys today.
All right, so today we have a special episode for you.
So Lauren and I were in a sorority in college, Alpha Epsilon Phi and one of our sorority
sisters Tiffany Hoxie reached out to us about a friend she knew who was dealing with a rare
(08:05):
autoimmune disease.
Yes, her name is Jess Maldof.
Am I saying it correctly, Jess?
You got it.
Perfect.
And we have her here with us today.
So welcome to I've Got Guts, Jess.
Thank you.
So you're coming up from New York City.
How's the weather been?
Because we're in the frozen tundra here in Western New York.
(08:29):
The weather this winter has been rough, I will admit.
Not used to it being so cold and as much snow as we've gotten in the city.
But the last few days have been pretty warm, which has been pretty nice.
But yeah, I'm not I'm I'm an old hat with winter.
I grew up in Canada, so I'm not making a big deal for me.
(08:51):
I'm not used to it.
It's a cute walk.
It's like nothing.
My first winter in New York City, I was like, what?
This is winter?
Doesn't make any sense.
My mom is from New York City and she always says, if we got this much snow that we get
here in Rochester, New York City, they'd shut the whole city down.
Yeah.
Oh, too funny.
Well, we are so excited to have you share your journey with your rare autoimmune disease.
(09:15):
But before we get into it all, can you share just a little bit about yourself?
How old you are, where you're from, what you do for a living?
Yeah.
So as I mentioned, I live in New York City.
I am 37 years old right now.
And I originally am from Canada.
I grew up in Montreal, Quebec, Canada, which is not far from New York City.
(09:39):
It's like seven hours straight north.
You hit the I-87 and you drive right to the border and then you go about another hour
and you hit Montreal.
So it's not that far.
But that's where I grew up.
And I've lived in New York City for just over nine years at this point.
Wow.
So I've been here quite a long time.
(09:59):
It feels like shorter and also longer, but it's been nine years.
What I do for a living, I work for the New York Public Library.
I'm a librarian.
That's like the coolest job ever.
I know, right?
It has its moments, I will admit.
Awesome.
So when did you first start noticing symptoms and how did they impact your daily life?
(10:27):
So let's go back in time to 2017.
My first symptom that I remember, and it is possible there were symptoms before that are
pretty vague.
I remember before it really kicked off, I had like a weird cough a few months prior,
but nobody can kind of confirm that this is related.
(10:48):
But my first real symptom that I know of was in late June of 2017, I woke up with pain
and pressure in my left ear and I thought I had an ear infection.
And I had been in New York for just over a year at that point.
(11:10):
I was newly dating someone who was away at the time and I didn't really know how to navigate
the healthcare system very well at that time, coming from Canada, where things are very
different healthcare wise.
So I remember thinking, oh, my new boyfriend is going to be home this weekend from his
(11:36):
trip.
I'm going to just wait until he gets back and he'll tell me how to take care of this.
And he came back, we went to urgent care.
I remember the woman who examined me said, oh, I don't really see anything in your ear,
but maybe I'll clean it out.
You'll feel better.
Didn't feel better.
Spoiler alert, didn't feel better.
That did nothing.
(11:57):
Went back to urgent care, they gave me like a Z-Pak or something really basic and that
did nothing.
And then on a third trip to urgent care, they said something which I already kind of knew,
which was we can't help you.
You need to go see an ENT.
(12:18):
And I did that.
I spent a whole summer seeing an ENT like every week and nothing changing and getting
worse and worse and worse to the point where I then over the course of summer developed
what they said was a double ear infection and then sinusitis on top of that.
(12:40):
And by the end of the summer, I was in the ER, not able to function, couldn't walk, couldn't
really stay awake, couldn't really do anything, having trouble breathing.
And that kind of kickstarted the actual diagnosis.
I went from really healthy three days a week working out, full-time job, full-time life
(13:06):
outside of work to bedridden is how I describe it in under three months.
That's insane.
Yeah.
That's scary.
And they just did wrong diagnosis after wrong diagnosis.
Yeah.
Yeah.
Were you just like at your wits end, super frustrated, I'm sure?
(13:27):
Frustrated beyond belief.
I knew in my gut that nothing that was being done to help me was helping.
And the ENT that was taking care of me that summer really didn't do a very good job.
And I just remember the last time I had an appointment with him, he mentioned that it
(13:55):
could be this rare autoimmune disease, that it might not be just a regular ear infection.
And I'm grateful that he said it.
I'm not grateful how he handled it, but I am grateful that he said it because that was
the spark that led me down the right path to getting an answer as to what was going
(14:16):
on.
Yeah.
I have a similar story actually.
I had a doctor who suggested gastroparesis almost two years before I was actually diagnosed
with it.
And I wish I would have just gone with that from the beginning.
Yeah.
I wish he had pursued it because he could have.
Yeah.
He said to me, you should go to your primary care doctor and have them run blood work to
(14:39):
look for autoimmune markers when he could have done that himself, ordered it.
But it did set me on the path of getting diagnosed, which I do appreciate.
But I wouldn't.
Off air, I will tell you the doctor, if you know anyone in New York City, you can go in
and see a therapist.
(15:00):
He always appreciates it.
We got a list going on.
Yeah.
To not see it in different.
Oh, yeah.
Parts of the world.
We do.
We do.
So, OK.
So how long did it take?
So the onset of symptoms until you finally got your diagnosis.
So how long was that before you finally got?
(15:20):
It was basically just over three under four months to full from what I can definitely
say was a symptom to the phone call from the pulmonologist saying.
And I'll just tell everybody now.
So what I have is called granulomatosis with polyangiitis.
It used to be called Wagner's.
(15:42):
Many people know it still as Wagner's.
Many doctors still call it Wegener's or Wegener's granulomatosis.
But it was renamed technically granulomatosis with polyangiitis or GPA, as we call it.
It is a form of vasculitis, which is a heading that covers about 20 different conditions,
(16:03):
all dealing with inflammation in blood vessels.
So vasculitis, the vascular system, that's what it is.
So this particular disease is its inflammation in small to medium blood vessels in very specific
organs.
And it also includes granulomas.
(16:25):
So that's that's what it is.
It's really rare.
It's 10 in a million.
I sometimes will interact with doctors who've never met anyone who has it, even though I
live in New York City.
They'll say to me, oh, I remember that from med school.
(16:45):
We talked about that for about 20 minutes.
And then I try to talk as much as I can because I want to remind them that this exists and
that it should be on their radar as far as potential patients who are coming in with
symptoms.
But yeah, it's it's super rare.
And I'm one of the lucky ones.
(17:06):
It's so scary, especially when you sit down with a doctor who you believe is going to
be helping you.
And then they're like, oh, yeah, I remember hearing about that in med school, but I've
never actually dealt with it myself.
You're like, great.
Trust you.
Yeah, I not not even just a few weeks ago said to a doctor, I respect you as a doctor,
but I am the expert in my Wegener's.
(17:27):
So I'm telling you how this works.
I love that.
I can tell that you have not interacted with anybody with my condition.
And I know a lot more about it than you do.
And I sorry, it's true.
So and that was me saying no to something that they wanted to do.
We can talk about that after because I'm going to have surgery tomorrow.
(17:48):
So it was in relation to preparing for that.
Yeah.
So how did you feel when you finally received the diagnosis?
Was it a relief, a shock or kind of both?
I wasn't shocked.
By that point, I was not shocked.
It had been pretty obvious at that point that that was what was wrong with me because the
(18:13):
actual diagnosis came from my pulmonologist.
So let me backtrack a little bit.
To get diagnosed with my condition, you have to meet three major criteria essentially.
The first is you have blood tests done.
They're looking for very specific Wagner's GPA markers.
(18:36):
So if anybody listening knows about this stuff, it's the PR3 and the ANCA.
If you're ANCA positive and your PR3 is elevated.
And then you also have to do a checked x-ray.
So I had lesions on my lungs that I did not know about until I got the ball rolling on
diagnosis, which is why I couldn't breathe.
(18:59):
And then the third thing is a tissue sample that is looked under a microscope in a lab
where they can see the granulomas.
My only other experience with granulomas before my diagnosis was a memorable episode of the
(19:20):
show Botched, the E Network.
I've seen that.
I've seen that.
A woman had injected cement into her rear end and her body had started creating granulomas
to surround these foreign entities that are not supposed to be in your body.
(19:41):
And I just remember the doctor, one of the doctors on the show saying, see, this is what
granulomas look like.
And they kind of look like paisleys, weirdly enough, paisley shape.
And they surround entities in your body, foreign invaders that the immune system is having
trouble dealing with.
And they cordon off that tissue and that tissue will die, but the body will survive is kind
(20:06):
of what the granulomas purpose is.
And in the case of somebody with my condition, the granulomas are cordoning off tissue that
is totally healthy.
It's just your body telling your body it's the wrong information.
So I check, check, check all three and got my diagnosis mid-to end September of 2017 officially
(20:31):
and then started the proper treatment after that.
Yep.
And you were young too, right?
You said you were 29 when you were diagnosed?
I was 29 when I got diagnosed.
I actually spent my 30th birthday in the infusion chair getting my six hour chemo.
That was very exciting.
(20:51):
I remember on the screen, when you're hooked up to the machine and they've got your info
on the screen, I remember on the day I had a little crown on my name because it was my
birthday.
Oh my God.
Most people are out getting infused with vodka and you were getting infused with drugs.
That's a way to bring in those 30s.
(21:12):
Yay.
Yeah.
Goodness.
So what specific treatment or surgeries did you have to have for this?
So I had to, the infusion drugs that is prescribed for GPA is called Rituximab.
(21:37):
It is used for a couple of different vasculitis conditions as well as a few different cancers.
It is technically a chemotherapy drug, but I always like to say that it's chemo light
because it does not cause so many of the problems that other chemotherapy drugs do.
(21:57):
So thankfully it did not affect my fertility and it also did not make all my hair fall
out.
It did make all my hair fall out, but not all of my hair.
So I did four sessions of that drug over the course of a month after my initial diagnosis.
Many GPA patients will have to do maintenance sessions once or twice a year.
(22:22):
I have been very, very lucky and I have not had to do that since.
So I am probably a bit of an anomaly in that sense.
I have done very, very well with my treatment.
I also had to do a bronchoscopy and a biopsy of my lung in that initial diagnosis phase.
(22:46):
That's how they were able to confirm the granulomas and diagnose me officially.
I had lesions all over my airway that I didn't know about.
I remember when my pulmonologist called to diagnose me, she was like, girl, you take
(23:07):
the right procedure for the diagnosis.
I remember I had to pick between two different options to have this surgery.
She's like, you knew, you just knew you had all those lesions on your airway.
I was like, I don't know, but I guess I made the right decision.
So that was in the initial phase.
(23:28):
And then since then, I've had two ear surgeries on my left ear.
So long story short about that, I am left with severe hearing loss in my left ear.
And that is really my biggest issue that remains since diagnosis.
(23:48):
Everything started in my left ear.
And when I finally got on the right meds, it just never came back online.
And tomorrow, I will be having my third and hopefully final ear surgery.
So that's really exciting.
And also an entire year of Prednisone.
Oh, God, that's a beef.
(24:11):
Yeah.
Yeah.
The devil's tic tacs for real.
Yeah.
Oh, I love that.
I've never heard of it.
Devil's tic tacs.
Yeah.
I'm going to use the devil's tic tacs from now on.
Yeah.
I read many a meme back in the day about Prednisone and my Prednisone-induced depression.
Yeah.
(24:32):
But yeah, it was almost four months on 60 milligrams, which is the highest dose you
can do.
Oh, my God.
And then another six, seven months to taper.
So I was able to get off finally after a year, but that was almost as bad as the GPA itself.
Yeah.
(24:52):
I was on 10 milligrams and I thought I was dying.
Yeah, it is.
They're no joke.
Yeah.
Literally no joke.
And I take a daily immunosuppressant, but it's very mild.
And I've been doing that since getting off Pred.
And that's everything so far.
That's awesome.
That's awesome.
So I mean, you've been through a lot.
You've been losing your hearing in that year and just the ups and downs the whole time.
(25:17):
Can you talk about just the emotional and mental challenges you faced in coping with
the disease?
I know you mentioned depression in there, too.
It's just like it wears on you.
It weighs on you, your heart, your mind, your soul, literally, right?
Yeah.
It's interesting because the Prednisone, I was in a clinical depression induced by the
(25:41):
Prednisone.
And I had almost every other Prednisone symptom you can think of because I was on such a high
dose for so long.
But it was very interesting because I just remember about two weeks after getting off
Pred, I could not even cry about what had happened to me.
(26:04):
And I spent that entire year sobbing.
And it really goes to show my mental strength that once I was off those medications that
were that medication that was causing so much mental angst, I just I was done with it.
(26:33):
I was sick and tired of being sad.
And I'm very lucky in that sense that this hasn't caused any more severe mental angst
than it did.
Yeah, that first year was rough.
(26:56):
It's rough beyond words.
And it was I've told people that first year I was ill.
I was really ill that first year.
And then the second year was not feeling well.
And then the third year was, OK, I'm starting to feel like myself again.
(27:17):
It really took three years to recover from something that only was really damaging me
for about three months.
So it's pretty crazy to think about how long it took to recover, but also that the body
is able to recover from something like this.
Yeah, I think anybody with a chronic illness can relate.
(27:40):
That first year after diagnosis is just it's like trying to accept it, but also being depressed.
And like I remember my first year after diagnosis, I was a shell of myself.
I was like a completely completely.
And I was having so much body pain and joint pain.
I had trouble walking.
I had trouble walking upstairs, downstairs.
(28:02):
I remember being on a New York City bus heading home from a blood draw.
I was on medical leave from work.
And you know, I was young.
I was twenty nine, thirty years old.
And I was sitting in one of the handicapped chairs, nearly passed out.
(28:22):
And this elderly woman comes up to me and says, can I have your seat?
And I just remember looking up, pulled up my arm, showed her the blood drawn, said, no,
I'm sorry, I can't get up.
Oh, my God. Yeah.
And she she she was that apologizing to me and I was apologizing to her because, oh,
my God, to think about not getting up for an elderly woman, I felt terrible.
(28:44):
But you didn't have it in you.
I didn't have I I just couldn't I couldn't.
Yeah. Yeah.
So can you talk to us a little about your boyfriend, who's now your husband,
who's been incredibly supportive over the years, because we just actually did a whole
episode about spouse support and how crucial it is.
(29:05):
Yeah. My so
my husband and I met in March of twenty seventeen.
I developed symptoms in June and in August was in the ER.
So we were only together for a short period of time before this all blew up in our faces.
Wow.
(29:28):
The second time he ever met my dad was in the hospital for my bronchiopsy.
Oh, my God. Yeah, it's kind of crazy.
And because I'm originally from Montreal, my family wasn't here.
So it was even more disjointed and crazy.
I would not have made it through if not for him.
(29:49):
I would not be living in New York any longer.
I would not have the life I have if not for the way that he took care of me at that time.
I could not take care of myself.
I needed somebody to help me bathe.
I needed someone to help me dress.
(30:11):
I needed somebody to help make sure I was eating.
He did all of that.
When we got married in 2020,
the rabbi who married us, who actually knew me prior to knowing my husband,
(30:31):
because he is a patron of mine from the library.
And yeah, I know his kids.
I know his family.
I love that. It's very sweet.
He in his words that he said to us, he said,
the two of you are already married in every way other than legally.
You've walked the walk of in sickness and in health.
Yeah, literally. Yeah.
(30:53):
And something that he said to me is funny, too,
because one of his family members, shout out to her.
I'm sure she's going to listen to this.
I love dearly question him at the time saying,
are you sure you want to stick around to deal with all this?
And his answer was, yep, yep, I'm in it.
(31:17):
And I think he had the vision that I was going to recover
and I would have a relatively normal life.
I really think that's because of him.
And he also was able to advocate for me in medical situations
when I couldn't for myself, which was obviously very important in the year.
This first that first month when it was really hard for me to really
do anything for myself.
(31:39):
Yeah. That speaks volumes.
To the kind of person he is. Yes.
And you guys were clearly obviously meant to be together to find each other.
And it's just I like Goosebumps when you're telling the story.
I love it. I love a good love story.
It is totally a love story.
If you I always tell people to watch the movie The Big Sick.
(31:59):
Yeah, I've seen that.
Yeah, I've never seen it.
So big, big recommendation for all of us.
Spoonies. It's a great movie.
It's hilarious. It's Kumail Nanjiani.
It's based on the real story of how he met his wife, Emily.
And Emily and I have different diseases, but they're very similar
(32:20):
and they're treated in the exact same way.
And I always tell people, if you want to kind of get an idea
of what our life was like, that's kind of what happened to us.
But my husband is not Pakistani and he's not a standup comedian.
And I was never in a coma.
But other than that, it lines up perfectly.
(32:40):
It's basically the same. Your life, your love story.
Like a documentary. Yeah.
I love it. I love it.
All right. Well, you have surgery coming up tomorrow, you said, right?
Yeah. So it's a final piece in the puzzle for you.
Final piece in the puzzle. So.
The lesions on the lungs all cleared up over the years.
(33:02):
The right ear came back online.
Yes, I have a deviated septum I didn't have before.
Yes, I have sinus pain I didn't have before.
But more or less everything was resolved except for this left ear.
So I cannot hear in my left ear.
I have severe hearing loss.
And I've had tubes.
(33:23):
I had my eardrum rebuilt and nothing has fixed this problem.
So what is happening tomorrow is I'm having a device, an implant
put into my head.
I keep making the joke. I'm going to be a silo now.
I mean, I mean, but it's kind of like a cochlear implant.
(33:47):
But in this case, it is a bone induction implant.
And the difference is that a cochlear implant is for people
who have issues with their cochlea with their inner ear.
They are either born deaf because of a birth issue or what have you.
And they need this device to replace the full function of an ear.
(34:11):
Whereas in my case, my issue is not my inner ear.
My inner ear is intact.
My hearing bones are intact, thank God.
But my middle ear is totally destroyed.
So the tunnel with which sound travels from outside your body
into your ear and then the message can be sent to your brain.
The sound waves cannot make it where they need to go.
(34:33):
So what is going to happen is they will put a device both under my skin
and then I will have a device that goes on top of my skin
and they will meet through a magnet.
And the device will be able to take the sound in,
convert it to electronic information.
(34:57):
And it'll be back through the device under the skin.
And those vibrations will then go directly into the bone.
So the way I describe it is I live in Queens.
I got to get to Manhattan. The tunnel is destroyed.
And now my little implant will be like a permanent helicopter for sound.
All the sound will be able to bypass my completely destroyed middle ear.
(35:22):
So that's what's happening tomorrow.
Wow. Very exciting.
How are you feeling? Are you nervous or excited?
I'm so excited. I'm a little nervous,
mostly because I'm pretty sure they're going to have to shave part of my head.
I know, but I'm so excited.
(35:42):
And you lost, you said in the beginning, right?
So to go back there.
Yeah, I had the shower clump moment.
That was real exciting.
Yeah, I'm excited. I'm just excited.
When you lose a sense.
(36:04):
The way that I have it really puts into perspective.
Everything and this technology is amazing.
And it's amazing that it's available to people.
And I'm very, very fortunate and I'm very grateful.
And I can't wait.
Yeah, well, we can't wait to hear about it.
I feel like we're going to have to do a follow up interview
(36:24):
so you can tell us how everything's going.
Yeah, I also have tinnitus in that ear, which is mania inducing.
But hopefully this will help as well, because I don't hear anything else
in that year. The tinnitus is quite loud.
And now with this device, I'll be able to hear other things.
So hopefully that will help with the tinnitus as well.
(36:47):
Oh, I'm so excited for you.
Me too. Thank you.
Science is amazing, isn't it?
And technology. Amazing. Amazing.
So what advice would you give to someone who's newly diagnosed
or struggling with a rare autoimmune disease, kind of like you have?
(37:08):
My first piece of advice is don't believe everything you read on the Internet.
I love that. Google can be really amazing and also scary.
Yeah. Yeah.
And the truth is that even if somebody else has the same diagnosis as you,
it does not mean that you have anything in common, truly.
Everyone's.
(37:30):
Everyone's. Illness is different.
And it's not just their illness, but also their living situation
and what medical services they have accessible to them where they live.
I was very reliant on Facebook groups when I was initially diagnosed.
(37:54):
This is a rare disease.
I've only ever met two other people with it in my entire life.
And when you do get diagnosed with something that's not common,
that you really don't have anybody in your actual orbit who has it.
The Internet is a great resource.
So I was heavily reliant on those Facebook groups.
(38:15):
But as I improved and as I recovered,
I found those same Facebook groups to be very hard to handle.
Yes.
Some people's stories are almost too tragic and too hard to handle.
And I can donate money to GPA research and I can have others do so.
(38:45):
And I can spread awareness like coming on this podcast.
But sometimes there's only so much you can do for other people.
And those Facebook groups were ultimately not the greatest for my mental health.
So the other piece of advice that I would give is don't worry about being a pain
(39:06):
with your doctors or insurance company.
Yes, we love speaking our love language.
Oh, plain right. Do whatever.
It is your life.
And none of this is illegal.
And as my husband always says, if you don't ask, you don't get.
(39:29):
These people are working for you and you should make them work.
And if they're not working hard enough, find somebody else.
I think that everyone who has a chronic illness needs to develop doctor radar.
And if you're in a doctor's appointment and you don't feel you're getting the care you deserve,
(39:54):
it is time to find somebody else.
And that is my especially for women because we're socialized not to speak up.
And there's no reason not to.
We agree 100 percent.
We always say we care more about our own life than anyone else does.
So you got to fight for it.
Yep, absolutely.
(40:15):
And you're the expert in your condition.
Oh, yeah.
Nobody else is living it.
They're not with you when you're unwell at two in the morning.
They're not with you when you have to cancel again plans with friends, family.
They're not with you again when you have to call out again from work.
So it's just.
(40:37):
Yeah, sometimes it is hard to advocate for yourself, but it's all we have.
Yep.
Our voice. It's so powerful.
It's so important.
It really is.
It really is.
So when you chatted with me before the interview today,
you shared something super shocking about if someone was diagnosed with GPA before the 1970s,
(41:04):
what were they facing?
So I was like shocked, but I feel like it just shows how far research has come
and science has come technology right and what you would have been facing if you were born earlier.
So share with them.
Yeah, the truth is that prior to the 1970s, GPA had a fatality rate that was basically 100 percent.
(41:29):
Oh, my God.
Yeah.
You know, when I tell people that I have an autoimmune disease,
you know, the ones that people are most familiar with, something like rheumatoid arthritis.
Life altering, for sure.
My mom's mom had it and I remember her fingers and her toes and I will remember them the rest of my life.
(41:56):
But not going to kill you.
GPA will kill you.
The average survival rate for somebody diagnosed prior to the 1970s was five months.
The truth is that those patients were facing death.
And the reason is because if the disease continues to progress, you do not get enough oxygen in those organs.
(42:25):
So in my case, I had active disease in my ears and my nose, my throat, my airway and my lungs.
It also can affect people's kidneys.
And once those kidneys and lungs are not getting enough oxygen, that's it.
Wow, that is crazy.
(42:46):
Yeah.
I, the two weeks prior to really getting where I needed to go, which was rheumatology, not the ear, nose and throat department,
I was bedridden in my then boyfriend's apartment and I was told that I had a smell.
(43:12):
And the smell was that my organs were not getting enough oxygen and they were at the very, very, very, very beginning stages of not being able to function anymore.
And necrosis.
I'm just going to say it's kind of gross, but it's the truth.
(43:34):
So let's go back to the 1970s.
There was a doctor at the National Institutes of Health who had an idea to run clinical trials with then Wagner's patients, as they were known,
to see if his idea was correct. And his idea was that if you gave low grade chemotherapy to these patients and you monitored their labs very closely,
(44:03):
the thought was that the chemo would destroy the immune system. And when the immune system came back online, it would function normally.
The B cells and the T cells would have the right information and they would no longer have active Wagner's disease.
And they figured out that this theory was correct. These were the first GPA treatments available. And that doctor was Anthony Fauci.
(44:30):
Wow, really? Yeah. Yeah.
I have love for him like you have no idea. He like literally saved your life.
He literally saved your life. Twice.
Two different, both the Wagner's life and the COVID life.
And the reason he did not continue with GPA research is that HIV happened and he had the perfect background at the time of both
(44:58):
public health communicable diseases and the immune system. He had been doing all his research on autoimmune diseases.
And the treatment that Wegener's patients still receive today is based on those theories that the drugs have come a long way as far as side effects and intensity and all that and effectiveness.
(45:25):
But the treatment is still based on that initial idea. And it's pretty amazing to think about.
That is really amazing. So amazing.
So how are you thriving today despite the challenges that you have faced?
I'm thriving. I mean, sometimes I feel bad talking about Wegener's because I am such a success story.
(45:56):
I don't feel limited in any way by my diagnosis. I at this point in time in 2025 can do everything that I want to do with my body, whether that's work full time, travel.
(46:18):
I really love raving. I live in New York City and there's amazing techno and house music all the time.
And it's one of the things I love about living here.
And I'm making up for lost time because there were many, many years where I couldn't.
And yeah, definitely thriving, thankfully. And I'm appreciative of all the doctors, all the pulmonologists and ENTs and rheumatologists and pain management and gynecology and primary care doctor and over and over.
(46:56):
I even I think ended up at an infectious disease doctor. I've seen so many different things. It's crazy.
And my family and my friends for helping me through. And I'm very lucky.
(47:18):
So I hope maybe I can just be a good example to people of there is hope at the end of the tunnel, even though at the time the tunnel felt endless just years and years and years.
But, you know, sometimes sometimes things work out. And if I flare again, I'll flare again. I'm kind of trying to be Zen about it.
(47:41):
It's not really in my control. And if I flare, I just say to myself, it'll never be as bad as it was because when it started, I was an episode of House.
Nobody knew what was wrong with me. And now they do. So at least there's a plan in place.
And I already have my care team. So that's great. But, yeah, I don't want I don't want to make anybody jealous.
(48:12):
Like it's like an active disease right now listening to this being like, damn you, Jess.
What you said is the point of this podcast is we want to give others hope and show them a there's a community of people out there who have these rare diseases and be there is like you said, tunnel might feel really long and crazy.
(48:34):
But there is a light at the end of the tunnel. Most of the time.
Yes, there is smile like I wish everyone could see your smile.
Your energy. I just like feel it. You're just in such an amazing space and that light for people who maybe are in the darkness right now like you once were.
I will add one other thing to my story. I know intimately how lucky I am.
(48:59):
So, again, it's a super rare disease, 10 in a million. But I have a family member who also has it.
My mom's sister, my aunt, Gail, may she rest in peace.
She became very ill in the mid 90s. They had no idea what was wrong.
(49:20):
She was in a coma. She had to.
It was just terrible. And she officially got diagnosed with Wegener's in 99 if memory serves. And she just never recovered in the way that I have. She had to be in a wheelchair and her life was just completely.
I don't want to say destroyed, but because that's kind of road to her life, but it was never the same. And I knew that I had I saw it. I, I, this was somebody in my family and.
(49:58):
So I know very, very intimately how lucky I am and that I need to appreciate it and not waste any more time.
And that is one thing that I think chronic illness does is on the days where you feel good, you feel so good.
(50:21):
You don't feel you feel double good you because you know there are days where it's not good.
And it makes you appreciate the days that are good. And it gives you a perspective on life that you can't really get any other way.
And for that I am grateful. Yes, I love it. Perfectly beautifully sad. So beautifully sad. So last question before we wrap up. Is there anything you would like to share with our listeners just in general about raising awareness around GPA or if people want to be able to support or do anything for?
(51:02):
Yeah, I would just say whether GPA or any other rare disease that the majority of the public doesn't know about.
I just think we need to talk about these things as much as possible. Yep.
Anybody who wants to listen. I love that. I think one of the reasons that your friend Tiffany who I know sent me to you is because I'm an open book.
(51:34):
I will talk about any of this with anyone at any time at the drop of a hat because I feel it's my duty.
It's my job to educate and explain and the more we can talk about these things, the better off we all are going to be.
And I just want to say in particular with family. Yes. Yep.
(52:03):
when that ENT said it could be this autoimmune thing called Wegener's. You should go to your primary care doctor. It pained.
It pained because I remembered I had heard that word before.
And when I called my mother to say, hey, where have I heard this before?
Is this somebody that we know? And her response of, yeah, your Aunt Gail, that's what she has.
(52:29):
If we talked with a family, people who are genetically related to us, who may have risk factors that they don't know about, you know, these kinds of things.
We just need to talk as much as possible. If I just have this feeling that if I had known more about my aunt's condition,
(52:54):
if I had been properly explained what had happened again, I was a child. I understand.
I just think things might have been a little easier for me. And I know that this is true because I have other friends.
In my mid to late 30s, I know many women, so many of my friends have rare autoimmune diseases or cancer diagnoses. So I think it's very important that we talk with our family members, that our mothers,
(53:27):
mothers talk to daughters about health conditions, daughters talk to daughters, friends, cousins, sisters, everybody needs to be talking because the more we talk, the better off we're all going to be.
I love that. And that's exactly why we started this podcast.
I'm out here too. I want to tell everybody so everybody knows. So we can all move forward with information. Information is the key. Information and diagnoses.
(53:57):
Again, when I got my diagnosis, I was not shocked. I was relieved. And I was, I remember crying because I was so relieved that I was finally going to, there was finally a plan.
Before the diagnosis, nobody knew what was happening. And after the diagnosis, it was, okay, this is what we have to do.
And don't you feel just more in control? You get a plan. It's like, okay, there's a plan. And I just, you just, now you have that roadmap of what to do.
(54:23):
And the only way through is through it. But once you're through it, you'll be done and you'll get to the other side.
That's so true. Beautiful. Well, we so, one, appreciate you taking the time to be on today with us.
A pleasure.
Share your story and grateful for Tiffany connecting us.
Yes. Thank you, Tiffany.
We love you and appreciate you. So thank you again.
(54:49):
Yeah, it was so nice talking to you today and just everything you said kind of resonated with us.
Like we feel the same exact way as you're feeling. So it's just nice.
Again, this is a community we're talking about. We don't have the same illnesses, but we have the same feelings.
So it's so nice to put this out in the world, to show people like we're all in this together.
(55:10):
We are. We are.
Yeah, we really are.
And good luck to you tomorrow.
We'll be thinking about you.
Thank you. Thank you.
And I am confident in saying if people are going to want to know how this goes for you, we got to have you back on.
Yeah.
Oh, sure. We can definitely do an episode about the implant. I'm very, very excited.
(55:31):
I've already tried the device on in the doctor's office.
Actually, they don't schedule you for the surgery until they know that it's what will be best for you.
And that requires you to try the device. I wore it for about an hour in the doctor's office.
And I included including a hearing test because they need to show statistically that it's improving your hearing.
(55:59):
But I remember within about a minute of having it on, I was practically in tears. I couldn't believe it.
I could hear traffic noises I normally can't hear.
And I remember the audiologist said, yeah, sometimes people will say, what's that noise after they put on the device?
And she said she says to them, those are your your steps. Those are your feet that you can't normally hear.
(56:24):
Yeah. So it is. It's just crazy to think about what life might be like after.
I think the thing that I'm most looking forward to is going to see a Broadway show.
Yeah. The words because it's not been the same movie theaters and Broadway shows and all that kind of stuff.
(56:46):
It's just very hard at the Broadway theaters. I mean, it's me and all the old old people getting the headphones.
So I'm looking forward to being able to hear normally in that environment more than I think I've ever looked for.
I can't wait. Yeah, I can't wait. I'm really, really, really excited.
(57:09):
Well, keep us updated. Yes, please do. We wish you well.
And we'll have you back soon. It was nice talking to you.
Thank you, Jess, so much. And we'll let you know when this is live and everything.
So it's good. I hope I didn't say like every two seconds.
You were great. You were millennials. I do it all the time, too.
(57:35):
I do it again. Well, you're wonderful. Thank you for just vulnerable and everything.
And it's good to see you and meet you. Yes, this is me.
I'm looking out into a story of Queens at my window and answering all your questions.
Yeah, I love talking about it because if I don't talk about it, it's like, what's the point?
(57:59):
What was the point of all that? Yep. Exactly.
Yeah, a bigger purpose at all. Right. So yeah.
And also when people get to my aunt, another aunt recently got diagnosed with Hashimoto's,
which is more common and not as big of a deal, to be honest.
Yeah, I have it. Yes, it's a basic. So many people have it.
(58:22):
My sister-in-law gets so many people have it. Yeah, it's pretty basic.
It's like, Kate, take your medication. You'll be fine. You'll be fine.
But, you know, she is amazing.
She's reached her mid to late 60s with no health issues.
And this is like the first big thing. And I even just talking to me for 10 minutes,
I was like, Kate, you got to come down, please.
(58:45):
Like, please bring it down a little bit. You'll be fine. You'll be fine.
So many people have it. You're totally fine. Yes.
And just the levity of that, I think, can help sometimes because afterwards she's like,
oh, I really needed that. I really needed somebody to tell me, OK, it's going to be OK.
You'll be fine. This is the basic thing.
If I was fine and I was like literally dying, it smelled like death.
(59:10):
I smelled like I was dying. Yeah, you'll be fine. Oh my God.
I have heard anecdotally from my rheumatologist that he is seeing an increase in cases,
especially women, young women.
Every time I see him, he says that to me every year.
(59:32):
It's like, oh, yeah, I'm seeing a lot more people, especially women your age, coming in with Wegener's.
Yeah, women in particular with autoimmune were the majority of the community.
So we definitely need to be on the lookout.
Carry the weight of everything. I know, right?
Literally everything. Literally everything. Yep. Yep. Absolutely.
(59:57):
Well, thank you again. Enjoy the rest of your Sunday. Thank you.
All right. We'll talk soon. OK. Bye. Bye.
All right. That is all we've got for you today.
Thank you for listening. We really appreciate likes, follows and reviews wherever you listen to your podcasts.
And you can find us at I've Got Guts podcast on Instagram and Facebook.
(01:00:20):
And you can email us at IveGotGut podcast@Gmail.com. See you next time. Bye bye.
Hello, I'm Stefanie.
(00:03):
And I'm Lauren.
And this is I've Got Guts.
A podcast about living and thriving with chronic illness.
Let's be real, it is really hard.
But it doesn't have to be.
You are not alone.
With this podcast, we want to create a community and a space to be able to talk about the tough
stuff and laugh along the way.
(00:24):
The idea for this podcast stemmed from us trying to find one for ourselves to listen
to, but not being able to find anything that didn't make us more sad or frustrated.
Our goal is to talk about the hard stuff, but also talk about how to get through it,
be positive, have a full and productive life, and of course thrive.
But before we get started, just so we are clear, we're not medical professionals.
(00:44):
We are just here sharing our personal experiences.
All right.
Thorns and roses.
Thorns and roses.
I'm going to go first.
You go first.
All right.
My thorn.
You go first.
All right, my thorn.
You were with me with my thorn this week.
So we went to a hibachi restaurant for dinner to celebrate Anthony's birthday.
(01:09):
And I called ahead of time to make sure they could do gluten free, right?
Because usually hibachi does not do gluten free.
Yeah, you knew they can do gluten free hibachi.
Right.
But could they give me something else so I could still get the experience, we could come
and celebrate?
And you know, poor Sean.
He never gets hibachi and he loves hibachi.
So I call ahead of time and they are like, oh yeah, we can do sushi.
(01:32):
No problem.
We'll prep sushi for you, you know, whatever you want in a separate area.
The chef has no problem doing that.
I'm like, yay.
And I love sushi.
And I also, I was thinking maybe this might be a new place for me to order sushi.
Right.
Because there's not a lot of places around.
Yeah, it's kind of tricky.
So we go, we get there and we sit down and I was like, I could just tell.
(01:55):
I asked her and I said, you know, I'm gluten free.
She was not very kind.
I'm like, I'm gluten free.
I called ahead of time, I have celiac disease that you guys can make the sushi, you know,
be gluten free, no cross contamination.
She's like, oh no, we definitely can't do that.
Yeah.
What?
Like it wasn't even.
Yeah, it was kind of shocking.
(02:15):
Yeah, I'm sure or let me check.
It was like, no, we can't.
They soak, I guess the seaweed or the rice in soy sauce.
They were soaking something in something.
So I'm like, what?
She's like, well, did you talk to a young girl on the phone?
I'm honestly, I couldn't tell you who I talked to, what her name was.
Note to self, get names from now on.
I was like, what?
(02:36):
So I was like, told her what my conversation, they said they could do it.
And she's like, well, I guess I can check.
She's like, we do the hibachi, you know, we can prepare it in the back and give it to
you.
So I'm like, oh boy.
So she goes to the back to the kitchen, comes back with our drinks.
And she's like, yeah, no, can't do sushi.
I'm like, all right, I'm all set.
(02:58):
She's like, oh, we could do hibachi in the back.
I'm like, no, I'm good.
Because you know, when you just get that gut feeling.
I can tell you got the ick.
Yes.
Yes.
As soon as her like her vibe and just her, how she handled it, I just knew in my belly,
I'm like, I'm all set.
And if the celiacs and gluten free people listening right now, you know how it feels.
(03:19):
I'd rather enjoy my night and just enjoy my wine versus have the fear of getting sick.
Am I going to puke in two hours?
Right.
Like, are they really going to be able to do it?
Because if they told me wrong on the phone the first time, I feel like I lost their trust.
So it was definitely my thorn.
But even though I could not enjoy any food, it was still such a fun night.
(03:39):
It was a really good hibachi chef.
It was a good hibachi chef.
All right, Room, what's your thorn?
My thorn is just a tough one.
Like I've I've been teaching for, oh my God, like 18 years now.
And I've had a few times in my career where I felt defeated, unheard and genuinely angry.
A few.
Like I can count on one hand.
(04:00):
And this week was one of those times, unfortunately.
And it's really just taken a huge toll on me.
And I've spent the majority of the week stressed, crying and or completely zoned out because
it's the only thing my brain has allowed me to think about.
Like, I can't tell you how many times this week Anthony's been like, what are you there?
(04:20):
What are you thinking about?
Are you OK?
And I'm like, sorry.
Yep.
Just it's the only thing I can think about.
So it's just it's hard sometimes as teachers, like when we feel like our voices aren't heard.
Just takes a toll on you.
It does.
And, you know, we work with kids and it's always about what's in the best interest for
(04:41):
them, you know, when you're not feeling heard as you're advocating for your kids, students,
whoever it may be.
It's tough.
It's our students are our babies and it's hard.
It is.
It is.
I was just saying to Sean the other day that literally I spend probably we probably spend
more time with our class than they do with their families.
(05:04):
Right.
During the school year.
And we're together six, seven hours a day.
So it's true.
Not a good sign.
Casting the vision for a better week for you, Room.
I hope so.
All right.
Rose.
You start.
OK, I'm going to start.
So today we were in Syracuse for a hockey game.
(05:28):
And this was just such a bright spot in our weekend.
And my mother in law, my father in law and my sister in law came and surprised Connor
at the game.
So because Syracuse is about halfway, not even half maybe a little bit further for them.
But yeah, so they came and they haven't seen him yet play this game or play hockey this
(05:50):
year yet.
So they came, they surprised him and Connor, like the look on his face, I went down and
like, look who's in the stands and like Grandma, Mick and Coll like waving.
And it was just he was so excited.
So we so appreciate them, you know, coming out and surprising him and cheering him on.
But really, my real Rose, personally, my mother in law just got back from Ireland and she
(06:16):
bought me, are you ready, Room?
An Irish sweater that I've been having my eyes on for years since she actually bought
one for Coll.
I love a good sweater.
Oh, but it's like one of those sweaters with the buttons.
So it can be like a shawl, but it could be like a poncho situation, but then it can be
like a regular sweater.
Shoot, I need one.
I mean, well, Chris, here you go.
(06:37):
Gotta go back to Ireland.
Next time you go to Ireland, Rooms going to need a sweater.
So that was definitely my Rose.
I was so excited.
I've been watching Coll wear hers for a long time.
I'm like, I really like that.
I want one.
I'm so glad you finally have one.
Yeah, so that was my Rose.
What about yours?
So my Rose is obvious, so we were supposed to celebrate Anthony's birthday last weekend,
(06:59):
but we couldn't because I was recovering from my egg retrieval.
So we moved the birthday celebration to this weekend and we did an escape room with our
friends Keegan, Taryn and Matt and we have a new record.
We made it out with 11 minutes to spare.
You were like so zipped up about this.
I'm so proud of you guys.
I mean, we did have to use all the hints, but that's okay.
(07:21):
That's what they're for.
It was a hard one, it's a casino heist.
I love the casino and I love poker.
But I don't love it.
There's a poker table in there.
I don't like escape rooms.
I know you're just not a big fan.
You would have liked this one though because it had everything to do with poker and everything.
So we did that and then we went to the Hibachi restaurant.
(07:43):
All right, let's get into it today.
We have a nice little interview set up for you guys today.
All right, so today we have a special episode for you.
So Lauren and I were in a sorority in college, Alpha Epsilon Phi and one of our sorority
sisters Tiffany Hoxie reached out to us about a friend she knew who was dealing with a rare
(08:05):
autoimmune disease.
Yes, her name is Jess Maldof.
Am I saying it correctly, Jess?
You got it.
Perfect.
And we have her here with us today.
So welcome to I've Got Guts, Jess.
Thank you.
So you're coming up from New York City.
How's the weather been?
Because we're in the frozen tundra here in Western New York.
(08:29):
The weather this winter has been rough, I will admit.
Not used to it being so cold and as much snow as we've gotten in the city.
But the last few days have been pretty warm, which has been pretty nice.
But yeah, I'm not I'm I'm an old hat with winter.
I grew up in Canada, so I'm not making a big deal for me.
(08:51):
I'm not used to it.
It's a cute walk.
It's like nothing.
My first winter in New York City, I was like, what?
This is winter?
Doesn't make any sense.
My mom is from New York City and she always says, if we got this much snow that we get
here in Rochester, New York City, they'd shut the whole city down.
Yeah.
Oh, too funny.
Well, we are so excited to have you share your journey with your rare autoimmune disease.
(09:15):
But before we get into it all, can you share just a little bit about yourself?
How old you are, where you're from, what you do for a living?
Yeah.
So as I mentioned, I live in New York City.
I am 37 years old right now.
And I originally am from Canada.
I grew up in Montreal, Quebec, Canada, which is not far from New York City.
(09:39):
It's like seven hours straight north.
You hit the I-87 and you drive right to the border and then you go about another hour
and you hit Montreal.
So it's not that far.
But that's where I grew up.
And I've lived in New York City for just over nine years at this point.
Wow.
So I've been here quite a long time.
(09:59):
It feels like shorter and also longer, but it's been nine years.
What I do for a living, I work for the New York Public Library.
I'm a librarian.
That's like the coolest job ever.
I know, right?
It has its moments, I will admit.
Awesome.
So when did you first start noticing symptoms and how did they impact your daily life?
(10:27):
So let's go back in time to 2017.
My first symptom that I remember, and it is possible there were symptoms before that are
pretty vague.
I remember before it really kicked off, I had like a weird cough a few months prior,
but nobody can kind of confirm that this is related.
(10:48):
But my first real symptom that I know of was in late June of 2017, I woke up with pain
and pressure in my left ear and I thought I had an ear infection.
And I had been in New York for just over a year at that point.
(11:10):
I was newly dating someone who was away at the time and I didn't really know how to navigate
the healthcare system very well at that time, coming from Canada, where things are very
different healthcare wise.
So I remember thinking, oh, my new boyfriend is going to be home this weekend from his
(11:36):
trip.
I'm going to just wait until he gets back and he'll tell me how to take care of this.
And he came back, we went to urgent care.
I remember the woman who examined me said, oh, I don't really see anything in your ear,
but maybe I'll clean it out.
You'll feel better.
Didn't feel better.
Spoiler alert, didn't feel better.
That did nothing.
(11:57):
Went back to urgent care, they gave me like a Z-Pak or something really basic and that
did nothing.
And then on a third trip to urgent care, they said something which I already kind of knew,
which was we can't help you.
You need to go see an ENT.
(12:18):
And I did that.
I spent a whole summer seeing an ENT like every week and nothing changing and getting
worse and worse and worse to the point where I then over the course of summer developed
what they said was a double ear infection and then sinusitis on top of that.
(12:40):
And by the end of the summer, I was in the ER, not able to function, couldn't walk, couldn't
really stay awake, couldn't really do anything, having trouble breathing.
And that kind of kickstarted the actual diagnosis.
I went from really healthy three days a week working out, full-time job, full-time life
(13:06):
outside of work to bedridden is how I describe it in under three months.
That's insane.
Yeah.
That's scary.
And they just did wrong diagnosis after wrong diagnosis.
Yeah.
Yeah.
Were you just like at your wits end, super frustrated, I'm sure?
(13:27):
Frustrated beyond belief.
I knew in my gut that nothing that was being done to help me was helping.
And the ENT that was taking care of me that summer really didn't do a very good job.
And I just remember the last time I had an appointment with him, he mentioned that it
(13:55):
could be this rare autoimmune disease, that it might not be just a regular ear infection.
And I'm grateful that he said it.
I'm not grateful how he handled it, but I am grateful that he said it because that was
the spark that led me down the right path to getting an answer as to what was going
(14:16):
on.
Yeah.
I have a similar story actually.
I had a doctor who suggested gastroparesis almost two years before I was actually diagnosed
with it.
And I wish I would have just gone with that from the beginning.
Yeah.
I wish he had pursued it because he could have.
Yeah.
He said to me, you should go to your primary care doctor and have them run blood work to
(14:39):
look for autoimmune markers when he could have done that himself, ordered it.
But it did set me on the path of getting diagnosed, which I do appreciate.
But I wouldn't.
Off air, I will tell you the doctor, if you know anyone in New York City, you can go in
and see a therapist.
(15:00):
He always appreciates it.
We got a list going on.
Yeah.
To not see it in different.
Oh, yeah.
Parts of the world.
We do.
We do.
So, OK.
So how long did it take?
So the onset of symptoms until you finally got your diagnosis.
So how long was that before you finally got?
(15:20):
It was basically just over three under four months to full from what I can definitely
say was a symptom to the phone call from the pulmonologist saying.
And I'll just tell everybody now.
So what I have is called granulomatosis with polyangiitis.
It used to be called Wagner's.
(15:42):
Many people know it still as Wagner's.
Many doctors still call it Wegener's or Wegener's granulomatosis.
But it was renamed technically granulomatosis with polyangiitis or GPA, as we call it.
It is a form of vasculitis, which is a heading that covers about 20 different conditions,
(16:03):
all dealing with inflammation in blood vessels.
So vasculitis, the vascular system, that's what it is.
So this particular disease is its inflammation in small to medium blood vessels in very specific
organs.
And it also includes granulomas.
(16:25):
So that's that's what it is.
It's really rare.
It's 10 in a million.
I sometimes will interact with doctors who've never met anyone who has it, even though I
live in New York City.
They'll say to me, oh, I remember that from med school.
(16:45):
We talked about that for about 20 minutes.
And then I try to talk as much as I can because I want to remind them that this exists and
that it should be on their radar as far as potential patients who are coming in with
symptoms.
But yeah, it's it's super rare.
And I'm one of the lucky ones.
(17:06):
It's so scary, especially when you sit down with a doctor who you believe is going to
be helping you.
And then they're like, oh, yeah, I remember hearing about that in med school, but I've
never actually dealt with it myself.
You're like, great.
Trust you.
Yeah, I not not even just a few weeks ago said to a doctor, I respect you as a doctor,
but I am the expert in my Wegener's.
(17:27):
So I'm telling you how this works.
I love that.
I can tell that you have not interacted with anybody with my condition.
And I know a lot more about it than you do.
And I sorry, it's true.
So and that was me saying no to something that they wanted to do.
We can talk about that after because I'm going to have surgery tomorrow.
(17:48):
So it was in relation to preparing for that.
Yeah.
So how did you feel when you finally received the diagnosis?
Was it a relief, a shock or kind of both?
I wasn't shocked.
By that point, I was not shocked.
It had been pretty obvious at that point that that was what was wrong with me because the
(18:13):
actual diagnosis came from my pulmonologist.
So let me backtrack a little bit.
To get diagnosed with my condition, you have to meet three major criteria essentially.
The first is you have blood tests done.
They're looking for very specific Wagner's GPA markers.
(18:36):
So if anybody listening knows about this stuff, it's the PR3 and the ANCA.
If you're ANCA positive and your PR3 is elevated.
And then you also have to do a checked x-ray.
So I had lesions on my lungs that I did not know about until I got the ball rolling on
diagnosis, which is why I couldn't breathe.
(18:59):
And then the third thing is a tissue sample that is looked under a microscope in a lab
where they can see the granulomas.
My only other experience with granulomas before my diagnosis was a memorable episode of the
(19:20):
show Botched, the E Network.
I've seen that.
I've seen that.
A woman had injected cement into her rear end and her body had started creating granulomas
to surround these foreign entities that are not supposed to be in your body.
(19:41):
And I just remember the doctor, one of the doctors on the show saying, see, this is what
granulomas look like.
And they kind of look like paisleys, weirdly enough, paisley shape.
And they surround entities in your body, foreign invaders that the immune system is having
trouble dealing with.
And they cordon off that tissue and that tissue will die, but the body will survive is kind
(20:06):
of what the granulomas purpose is.
And in the case of somebody with my condition, the granulomas are cordoning off tissue that
is totally healthy.
It's just your body telling your body it's the wrong information.
So I check, check, check all three and got my diagnosis mid-to end September of 2017 officially
(20:31):
and then started the proper treatment after that.
Yep.
And you were young too, right?
You said you were 29 when you were diagnosed?
I was 29 when I got diagnosed.
I actually spent my 30th birthday in the infusion chair getting my six hour chemo.
That was very exciting.
(20:51):
I remember on the screen, when you're hooked up to the machine and they've got your info
on the screen, I remember on the day I had a little crown on my name because it was my
birthday.
Oh my God.
Most people are out getting infused with vodka and you were getting infused with drugs.
That's a way to bring in those 30s.
(21:12):
Yay.
Yeah.
Goodness.
So what specific treatment or surgeries did you have to have for this?
So I had to, the infusion drugs that is prescribed for GPA is called Rituximab.
(21:37):
It is used for a couple of different vasculitis conditions as well as a few different cancers.
It is technically a chemotherapy drug, but I always like to say that it's chemo light
because it does not cause so many of the problems that other chemotherapy drugs do.
(21:57):
So thankfully it did not affect my fertility and it also did not make all my hair fall
out.
It did make all my hair fall out, but not all of my hair.
So I did four sessions of that drug over the course of a month after my initial diagnosis.
Many GPA patients will have to do maintenance sessions once or twice a year.
(22:22):
I have been very, very lucky and I have not had to do that since.
So I am probably a bit of an anomaly in that sense.
I have done very, very well with my treatment.
I also had to do a bronchoscopy and a biopsy of my lung in that initial diagnosis phase.
(22:46):
That's how they were able to confirm the granulomas and diagnose me officially.
I had lesions all over my airway that I didn't know about.
I remember when my pulmonologist called to diagnose me, she was like, girl, you take
(23:07):
the right procedure for the diagnosis.
I remember I had to pick between two different options to have this surgery.
She's like, you knew, you just knew you had all those lesions on your airway.
I was like, I don't know, but I guess I made the right decision.
So that was in the initial phase.
(23:28):
And then since then, I've had two ear surgeries on my left ear.
So long story short about that, I am left with severe hearing loss in my left ear.
And that is really my biggest issue that remains since diagnosis.
(23:48):
Everything started in my left ear.
And when I finally got on the right meds, it just never came back online.
And tomorrow, I will be having my third and hopefully final ear surgery.
So that's really exciting.
And also an entire year of Prednisone.
Oh, God, that's a beef.
(24:11):
Yeah.
Yeah.
The devil's tic tacs for real.
Yeah.
Oh, I love that.
I've never heard of it.
Devil's tic tacs.
Yeah.
I'm going to use the devil's tic tacs from now on.
Yeah.
I read many a meme back in the day about Prednisone and my Prednisone-induced depression.
Yeah.
(24:32):
But yeah, it was almost four months on 60 milligrams, which is the highest dose you
can do.
Oh, my God.
And then another six, seven months to taper.
So I was able to get off finally after a year, but that was almost as bad as the GPA itself.
Yeah.
(24:52):
I was on 10 milligrams and I thought I was dying.
Yeah, it is.
They're no joke.
Yeah.
Literally no joke.
And I take a daily immunosuppressant, but it's very mild.
And I've been doing that since getting off Pred.
And that's everything so far.
That's awesome.
That's awesome.
So I mean, you've been through a lot.
You've been losing your hearing in that year and just the ups and downs the whole time.
(25:17):
Can you talk about just the emotional and mental challenges you faced in coping with
the disease?
I know you mentioned depression in there, too.
It's just like it wears on you.
It weighs on you, your heart, your mind, your soul, literally, right?
Yeah.
It's interesting because the Prednisone, I was in a clinical depression induced by the
(25:41):
Prednisone.
And I had almost every other Prednisone symptom you can think of because I was on such a high
dose for so long.
But it was very interesting because I just remember about two weeks after getting off
Pred, I could not even cry about what had happened to me.
(26:04):
And I spent that entire year sobbing.
And it really goes to show my mental strength that once I was off those medications that
were that medication that was causing so much mental angst, I just I was done with it.
(26:33):
I was sick and tired of being sad.
And I'm very lucky in that sense that this hasn't caused any more severe mental angst
than it did.
Yeah, that first year was rough.
(26:56):
It's rough beyond words.
And it was I've told people that first year I was ill.
I was really ill that first year.
And then the second year was not feeling well.
And then the third year was, OK, I'm starting to feel like myself again.
(27:17):
It really took three years to recover from something that only was really damaging me
for about three months.
So it's pretty crazy to think about how long it took to recover, but also that the body
is able to recover from something like this.
Yeah, I think anybody with a chronic illness can relate.
(27:40):
That first year after diagnosis is just it's like trying to accept it, but also being depressed.
And like I remember my first year after diagnosis, I was a shell of myself.
I was like a completely completely.
And I was having so much body pain and joint pain.
I had trouble walking.
I had trouble walking upstairs, downstairs.
(28:02):
I remember being on a New York City bus heading home from a blood draw.
I was on medical leave from work.
And you know, I was young.
I was twenty nine, thirty years old.
And I was sitting in one of the handicapped chairs, nearly passed out.
(28:22):
And this elderly woman comes up to me and says, can I have your seat?
And I just remember looking up, pulled up my arm, showed her the blood drawn, said, no,
I'm sorry, I can't get up.
Oh, my God. Yeah.
And she she she was that apologizing to me and I was apologizing to her because, oh,
my God, to think about not getting up for an elderly woman, I felt terrible.
(28:44):
But you didn't have it in you.
I didn't have I I just couldn't I couldn't.
Yeah. Yeah.
So can you talk to us a little about your boyfriend, who's now your husband,
who's been incredibly supportive over the years, because we just actually did a whole
episode about spouse support and how crucial it is.
(29:05):
Yeah. My so
my husband and I met in March of twenty seventeen.
I developed symptoms in June and in August was in the ER.
So we were only together for a short period of time before this all blew up in our faces.
Wow.
(29:28):
The second time he ever met my dad was in the hospital for my bronchiopsy.
Oh, my God. Yeah, it's kind of crazy.
And because I'm originally from Montreal, my family wasn't here.
So it was even more disjointed and crazy.
I would not have made it through if not for him.
(29:49):
I would not be living in New York any longer.
I would not have the life I have if not for the way that he took care of me at that time.
I could not take care of myself.
I needed somebody to help me bathe.
I needed someone to help me dress.
(30:11):
I needed somebody to help make sure I was eating.
He did all of that.
When we got married in 2020,
the rabbi who married us, who actually knew me prior to knowing my husband,
(30:31):
because he is a patron of mine from the library.
And yeah, I know his kids.
I know his family.
I love that. It's very sweet.
He in his words that he said to us, he said,
the two of you are already married in every way other than legally.
You've walked the walk of in sickness and in health.
Yeah, literally. Yeah.
(30:53):
And something that he said to me is funny, too,
because one of his family members, shout out to her.
I'm sure she's going to listen to this.
I love dearly question him at the time saying,
are you sure you want to stick around to deal with all this?
And his answer was, yep, yep, I'm in it.
(31:17):
And I think he had the vision that I was going to recover
and I would have a relatively normal life.
I really think that's because of him.
And he also was able to advocate for me in medical situations
when I couldn't for myself, which was obviously very important in the year.
This first that first month when it was really hard for me to really
do anything for myself.
(31:39):
Yeah. That speaks volumes.
To the kind of person he is. Yes.
And you guys were clearly obviously meant to be together to find each other.
And it's just I like Goosebumps when you're telling the story.
I love it. I love a good love story.
It is totally a love story.
If you I always tell people to watch the movie The Big Sick.
(31:59):
Yeah, I've seen that.
Yeah, I've never seen it.
So big, big recommendation for all of us.
Spoonies. It's a great movie.
It's hilarious. It's Kumail Nanjiani.
It's based on the real story of how he met his wife, Emily.
And Emily and I have different diseases, but they're very similar
(32:20):
and they're treated in the exact same way.
And I always tell people, if you want to kind of get an idea
of what our life was like, that's kind of what happened to us.
But my husband is not Pakistani and he's not a standup comedian.
And I was never in a coma.
But other than that, it lines up perfectly.
(32:40):
It's basically the same. Your life, your love story.
Like a documentary. Yeah.
I love it. I love it.
All right. Well, you have surgery coming up tomorrow, you said, right?
Yeah. So it's a final piece in the puzzle for you.
Final piece in the puzzle. So.
The lesions on the lungs all cleared up over the years.
(33:02):
The right ear came back online.
Yes, I have a deviated septum I didn't have before.
Yes, I have sinus pain I didn't have before.
But more or less everything was resolved except for this left ear.
So I cannot hear in my left ear.
I have severe hearing loss.
And I've had tubes.
(33:23):
I had my eardrum rebuilt and nothing has fixed this problem.
So what is happening tomorrow is I'm having a device, an implant
put into my head.
I keep making the joke. I'm going to be a silo now.
I mean, I mean, but it's kind of like a cochlear implant.
(33:47):
But in this case, it is a bone induction implant.
And the difference is that a cochlear implant is for people
who have issues with their cochlea with their inner ear.
They are either born deaf because of a birth issue or what have you.
And they need this device to replace the full function of an ear.
(34:11):
Whereas in my case, my issue is not my inner ear.
My inner ear is intact.
My hearing bones are intact, thank God.
But my middle ear is totally destroyed.
So the tunnel with which sound travels from outside your body
into your ear and then the message can be sent to your brain.
The sound waves cannot make it where they need to go.
(34:33):
So what is going to happen is they will put a device both under my skin
and then I will have a device that goes on top of my skin
and they will meet through a magnet.
And the device will be able to take the sound in,
convert it to electronic information.
(34:57):
And it'll be back through the device under the skin.
And those vibrations will then go directly into the bone.
So the way I describe it is I live in Queens.
I got to get to Manhattan. The tunnel is destroyed.
And now my little implant will be like a permanent helicopter for sound.
All the sound will be able to bypass my completely destroyed middle ear.
(35:22):
So that's what's happening tomorrow.
Wow. Very exciting.
How are you feeling? Are you nervous or excited?
I'm so excited. I'm a little nervous,
mostly because I'm pretty sure they're going to have to shave part of my head.
I know, but I'm so excited.
(35:42):
And you lost, you said in the beginning, right?
So to go back there.
Yeah, I had the shower clump moment.
That was real exciting.
Yeah, I'm excited. I'm just excited.
When you lose a sense.
(36:04):
The way that I have it really puts into perspective.
Everything and this technology is amazing.
And it's amazing that it's available to people.
And I'm very, very fortunate and I'm very grateful.
And I can't wait.
Yeah, well, we can't wait to hear about it.
I feel like we're going to have to do a follow up interview
(36:24):
so you can tell us how everything's going.
Yeah, I also have tinnitus in that ear, which is mania inducing.
But hopefully this will help as well, because I don't hear anything else
in that year. The tinnitus is quite loud.
And now with this device, I'll be able to hear other things.
So hopefully that will help with the tinnitus as well.
(36:47):
Oh, I'm so excited for you.
Me too. Thank you.
Science is amazing, isn't it?
And technology. Amazing. Amazing.
So what advice would you give to someone who's newly diagnosed
or struggling with a rare autoimmune disease, kind of like you have?
(37:08):
My first piece of advice is don't believe everything you read on the Internet.
I love that. Google can be really amazing and also scary.
Yeah. Yeah.
And the truth is that even if somebody else has the same diagnosis as you,
it does not mean that you have anything in common, truly.
Everyone's.
(37:30):
Everyone's. Illness is different.
And it's not just their illness, but also their living situation
and what medical services they have accessible to them where they live.
I was very reliant on Facebook groups when I was initially diagnosed.
(37:54):
This is a rare disease.
I've only ever met two other people with it in my entire life.
And when you do get diagnosed with something that's not common,
that you really don't have anybody in your actual orbit who has it.
The Internet is a great resource.
So I was heavily reliant on those Facebook groups.
(38:15):
But as I improved and as I recovered,
I found those same Facebook groups to be very hard to handle.
Yes.
Some people's stories are almost too tragic and too hard to handle.
And I can donate money to GPA research and I can have others do so.
(38:45):
And I can spread awareness like coming on this podcast.
But sometimes there's only so much you can do for other people.
And those Facebook groups were ultimately not the greatest for my mental health.
So the other piece of advice that I would give is don't worry about being a pain
(39:06):
with your doctors or insurance company.
Yes, we love speaking our love language.
Oh, plain right. Do whatever.
It is your life.
And none of this is illegal.
And as my husband always says, if you don't ask, you don't get.
(39:29):
These people are working for you and you should make them work.
And if they're not working hard enough, find somebody else.
I think that everyone who has a chronic illness needs to develop doctor radar.
And if you're in a doctor's appointment and you don't feel you're getting the care you deserve,
(39:54):
it is time to find somebody else.
And that is my especially for women because we're socialized not to speak up.
And there's no reason not to.
We agree 100 percent.
We always say we care more about our own life than anyone else does.
So you got to fight for it.
Yep, absolutely.
(40:15):
And you're the expert in your condition.
Oh, yeah.
Nobody else is living it.
They're not with you when you're unwell at two in the morning.
They're not with you when you have to cancel again plans with friends, family.
They're not with you again when you have to call out again from work.
So it's just.
(40:37):
Yeah, sometimes it is hard to advocate for yourself, but it's all we have.
Yep.
Our voice. It's so powerful.
It's so important.
It really is.
It really is.
So when you chatted with me before the interview today,
you shared something super shocking about if someone was diagnosed with GPA before the 1970s,
(41:04):
what were they facing?
So I was like shocked, but I feel like it just shows how far research has come
and science has come technology right and what you would have been facing if you were born earlier.
So share with them.
Yeah, the truth is that prior to the 1970s, GPA had a fatality rate that was basically 100 percent.
(41:29):
Oh, my God.
Yeah.
You know, when I tell people that I have an autoimmune disease,
you know, the ones that people are most familiar with, something like rheumatoid arthritis.
Life altering, for sure.
My mom's mom had it and I remember her fingers and her toes and I will remember them the rest of my life.
(41:56):
But not going to kill you.
GPA will kill you.
The average survival rate for somebody diagnosed prior to the 1970s was five months.
The truth is that those patients were facing death.
And the reason is because if the disease continues to progress, you do not get enough oxygen in those organs.
(42:25):
So in my case, I had active disease in my ears and my nose, my throat, my airway and my lungs.
It also can affect people's kidneys.
And once those kidneys and lungs are not getting enough oxygen, that's it.
Wow, that is crazy.
(42:46):
Yeah.
I, the two weeks prior to really getting where I needed to go, which was rheumatology, not the ear, nose and throat department,
I was bedridden in my then boyfriend's apartment and I was told that I had a smell.
(43:12):
And the smell was that my organs were not getting enough oxygen and they were at the very, very, very, very beginning stages of not being able to function anymore.
And necrosis.
I'm just going to say it's kind of gross, but it's the truth.
(43:34):
So let's go back to the 1970s.
There was a doctor at the National Institutes of Health who had an idea to run clinical trials with then Wagner's patients, as they were known,
to see if his idea was correct. And his idea was that if you gave low grade chemotherapy to these patients and you monitored their labs very closely,
(44:03):
the thought was that the chemo would destroy the immune system. And when the immune system came back online, it would function normally.
The B cells and the T cells would have the right information and they would no longer have active Wagner's disease.
And they figured out that this theory was correct. These were the first GPA treatments available. And that doctor was Anthony Fauci.
(44:30):
Wow, really? Yeah. Yeah.
I have love for him like you have no idea. He like literally saved your life.
He literally saved your life. Twice.
Two different, both the Wagner's life and the COVID life.
And the reason he did not continue with GPA research is that HIV happened and he had the perfect background at the time of both
(44:58):
public health communicable diseases and the immune system. He had been doing all his research on autoimmune diseases.
And the treatment that Wegener's patients still receive today is based on those theories that the drugs have come a long way as far as side effects and intensity and all that and effectiveness.
(45:25):
But the treatment is still based on that initial idea. And it's pretty amazing to think about.
That is really amazing. So amazing.
So how are you thriving today despite the challenges that you have faced?
I'm thriving. I mean, sometimes I feel bad talking about Wegener's because I am such a success story.
(45:56):
I don't feel limited in any way by my diagnosis. I at this point in time in 2025 can do everything that I want to do with my body, whether that's work full time, travel.
(46:18):
I really love raving. I live in New York City and there's amazing techno and house music all the time.
And it's one of the things I love about living here.
And I'm making up for lost time because there were many, many years where I couldn't.
And yeah, definitely thriving, thankfully. And I'm appreciative of all the doctors, all the pulmonologists and ENTs and rheumatologists and pain management and gynecology and primary care doctor and over and over.
(46:56):
I even I think ended up at an infectious disease doctor. I've seen so many different things. It's crazy.
And my family and my friends for helping me through. And I'm very lucky.
(47:18):
So I hope maybe I can just be a good example to people of there is hope at the end of the tunnel, even though at the time the tunnel felt endless just years and years and years.
But, you know, sometimes sometimes things work out. And if I flare again, I'll flare again. I'm kind of trying to be Zen about it.
(47:41):
It's not really in my control. And if I flare, I just say to myself, it'll never be as bad as it was because when it started, I was an episode of House.
Nobody knew what was wrong with me. And now they do. So at least there's a plan in place.
And I already have my care team. So that's great. But, yeah, I don't want I don't want to make anybody jealous.
(48:12):
Like it's like an active disease right now listening to this being like, damn you, Jess.
What you said is the point of this podcast is we want to give others hope and show them a there's a community of people out there who have these rare diseases and be there is like you said, tunnel might feel really long and crazy.
(48:34):
But there is a light at the end of the tunnel. Most of the time.
Yes, there is smile like I wish everyone could see your smile.
Your energy. I just like feel it. You're just in such an amazing space and that light for people who maybe are in the darkness right now like you once were.
I will add one other thing to my story. I know intimately how lucky I am.
(48:59):
So, again, it's a super rare disease, 10 in a million. But I have a family member who also has it.
My mom's sister, my aunt, Gail, may she rest in peace.
She became very ill in the mid 90s. They had no idea what was wrong.
(49:20):
She was in a coma. She had to.
It was just terrible. And she officially got diagnosed with Wegener's in 99 if memory serves. And she just never recovered in the way that I have. She had to be in a wheelchair and her life was just completely.
I don't want to say destroyed, but because that's kind of road to her life, but it was never the same. And I knew that I had I saw it. I, I, this was somebody in my family and.
(49:58):
So I know very, very intimately how lucky I am and that I need to appreciate it and not waste any more time.
And that is one thing that I think chronic illness does is on the days where you feel good, you feel so good.
(50:21):
You don't feel you feel double good you because you know there are days where it's not good.
And it makes you appreciate the days that are good. And it gives you a perspective on life that you can't really get any other way.
And for that I am grateful. Yes, I love it. Perfectly beautifully sad. So beautifully sad. So last question before we wrap up. Is there anything you would like to share with our listeners just in general about raising awareness around GPA or if people want to be able to support or do anything for?
(51:02):
Yeah, I would just say whether GPA or any other rare disease that the majority of the public doesn't know about.
I just think we need to talk about these things as much as possible. Yep.
Anybody who wants to listen. I love that. I think one of the reasons that your friend Tiffany who I know sent me to you is because I'm an open book.
(51:34):
I will talk about any of this with anyone at any time at the drop of a hat because I feel it's my duty.
It's my job to educate and explain and the more we can talk about these things, the better off we all are going to be.
And I just want to say in particular with family. Yes. Yep.
(52:03):
when that ENT said it could be this autoimmune thing called Wegener's. You should go to your primary care doctor. It pained.
It pained because I remembered I had heard that word before.
And when I called my mother to say, hey, where have I heard this before?
Is this somebody that we know? And her response of, yeah, your Aunt Gail, that's what she has.
(52:29):
If we talked with a family, people who are genetically related to us, who may have risk factors that they don't know about, you know, these kinds of things.
We just need to talk as much as possible. If I just have this feeling that if I had known more about my aunt's condition,
(52:54):
if I had been properly explained what had happened again, I was a child. I understand.
I just think things might have been a little easier for me. And I know that this is true because I have other friends.
In my mid to late 30s, I know many women, so many of my friends have rare autoimmune diseases or cancer diagnoses. So I think it's very important that we talk with our family members, that our mothers,
(53:27):
mothers talk to daughters about health conditions, daughters talk to daughters, friends, cousins, sisters, everybody needs to be talking because the more we talk, the better off we're all going to be.
I love that. And that's exactly why we started this podcast.
I'm out here too. I want to tell everybody so everybody knows. So we can all move forward with information. Information is the key. Information and diagnoses.
(53:57):
Again, when I got my diagnosis, I was not shocked. I was relieved. And I was, I remember crying because I was so relieved that I was finally going to, there was finally a plan.
Before the diagnosis, nobody knew what was happening. And after the diagnosis, it was, okay, this is what we have to do.
And don't you feel just more in control? You get a plan. It's like, okay, there's a plan. And I just, you just, now you have that roadmap of what to do.
(54:23):
And the only way through is through it. But once you're through it, you'll be done and you'll get to the other side.
That's so true. Beautiful. Well, we so, one, appreciate you taking the time to be on today with us.
A pleasure.
Share your story and grateful for Tiffany connecting us.
Yes. Thank you, Tiffany.
We love you and appreciate you. So thank you again.
(54:49):
Yeah, it was so nice talking to you today and just everything you said kind of resonated with us.
Like we feel the same exact way as you're feeling. So it's just nice.
Again, this is a community we're talking about. We don't have the same illnesses, but we have the same feelings.
So it's so nice to put this out in the world, to show people like we're all in this together.
(55:10):
We are. We are.
Yeah, we really are.
And good luck to you tomorrow.
We'll be thinking about you.
Thank you. Thank you.
And I am confident in saying if people are going to want to know how this goes for you, we got to have you back on.
Yeah.
Oh, sure. We can definitely do an episode about the implant. I'm very, very excited.
(55:31):
I've already tried the device on in the doctor's office.
Actually, they don't schedule you for the surgery until they know that it's what will be best for you.
And that requires you to try the device. I wore it for about an hour in the doctor's office.
And I included including a hearing test because they need to show statistically that it's improving your hearing.
(55:59):
But I remember within about a minute of having it on, I was practically in tears. I couldn't believe it.
I could hear traffic noises I normally can't hear.
And I remember the audiologist said, yeah, sometimes people will say, what's that noise after they put on the device?
And she said she says to them, those are your your steps. Those are your feet that you can't normally hear.
(56:24):
Yeah. So it is. It's just crazy to think about what life might be like after.
I think the thing that I'm most looking forward to is going to see a Broadway show.
Yeah. The words because it's not been the same movie theaters and Broadway shows and all that kind of stuff.
(56:46):
It's just very hard at the Broadway theaters. I mean, it's me and all the old old people getting the headphones.
So I'm looking forward to being able to hear normally in that environment more than I think I've ever looked for.
I can't wait. Yeah, I can't wait. I'm really, really, really excited.
(57:09):
Well, keep us updated. Yes, please do. We wish you well.
And we'll have you back soon. It was nice talking to you.
Thank you, Jess, so much. And we'll let you know when this is live and everything.
So it's good. I hope I didn't say like every two seconds.
You were great. You were millennials. I do it all the time, too.
(57:35):
I do it again. Well, you're wonderful. Thank you for just vulnerable and everything.
And it's good to see you and meet you. Yes, this is me.
I'm looking out into a story of Queens at my window and answering all your questions.
Yeah, I love talking about it because if I don't talk about it, it's like, what's the point?
(57:59):
What was the point of all that? Yep. Exactly.
Yeah, a bigger purpose at all. Right. So yeah.
And also when people get to my aunt, another aunt recently got diagnosed with Hashimoto's,
which is more common and not as big of a deal, to be honest.
Yeah, I have it. Yes, it's a basic. So many people have it.
(58:22):
My sister-in-law gets so many people have it. Yeah, it's pretty basic.
It's like, Kate, take your medication. You'll be fine. You'll be fine.
But, you know, she is amazing.
She's reached her mid to late 60s with no health issues.
And this is like the first big thing. And I even just talking to me for 10 minutes,
I was like, Kate, you got to come down, please.
(58:45):
Like, please bring it down a little bit. You'll be fine. You'll be fine.
So many people have it. You're totally fine. Yes.
And just the levity of that, I think, can help sometimes because afterwards she's like,
oh, I really needed that. I really needed somebody to tell me, OK, it's going to be OK.
You'll be fine. This is the basic thing.
If I was fine and I was like literally dying, it smelled like death.
(59:10):
I smelled like I was dying. Yeah, you'll be fine. Oh my God.
I have heard anecdotally from my rheumatologist that he is seeing an increase in cases,
especially women, young women.
Every time I see him, he says that to me every year.
(59:32):
It's like, oh, yeah, I'm seeing a lot more people, especially women your age, coming in with Wegener's.
Yeah, women in particular with autoimmune were the majority of the community.
So we definitely need to be on the lookout.
Carry the weight of everything. I know, right?
Literally everything. Literally everything. Yep. Yep. Absolutely.
(59:57):
Well, thank you again. Enjoy the rest of your Sunday. Thank you.
All right. We'll talk soon. OK. Bye. Bye.
All right. That is all we've got for you today.
Thank you for listening. We really appreciate likes, follows and reviews wherever you listen to your podcasts.
And you can find us at I've Got Guts podcast on Instagram and Facebook.
(01:00:20):
And you can email us at IveGotGut podcast@Gmail.com. See you next time. Bye bye.
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