June 9, 2025 • 37 mins
Chronic illness steals more than your health—it can rob you of your identity and everything you once loved. For Shira Haid, a classically trained musician and clinical massage therapist, the onset of multiple tick-borne illnesses, including Lyme disease, marked the beginning of a devastating transformation. What began as extreme fatigue in 2014 quickly spiraled into debilitating pain, cognitive dysfunction, and the loss of her independence.
The road to diagnosis proved maddening. Despite having a physician father actively helping with her care, Shira endured nearly two years of deteriorating health before finally discovering the root cause. Along the way, she faced shocking examples of medical gaslighting—being accused of drug use, labeled a "Lyme loony," and even receiving suggestions from a doctor about how she "should kill herself next time." These experiences highlight the profound ignorance and dismissal many chronic illness patients face when seeking help.
Perhaps most heartbreaking was Shira's disconnection from her artistic self. "For a very long time, my thought process was what is the point? There's no point in my artwork anymore, there's no point in doing music anymore, because that's over," she reveals. This creative death felt as painful as her physical symptoms, leaving her a shell of her former self.
The financial reality of chronic Lyme disease compounds these challenges. With insurance companies refusing coverage—even after the CDC's recent acknowledgment that Lyme can be chronic—Shira estimates her family has spent hundreds of thousands of dollars on treatments. Not everyone has this privilege, leading many patients to attempt creating their own treatment protocols out of desperation.
Yet through therapy, nutritional changes, and gradually reconnecting with her creative passions, Shira has begun the slow journey back to herself. When she finally sang again after years of silence, the experience brought tears and a flood of emotions, reminding her of the person she once was and could be again.
Have you experienced medical gaslighting or the grief of losing parts of your identity to illness? Share your story in the comments and join our community of resilient chronic illness warriors helping each other find a path forward.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
Let's Get Started - Rare Patient Voice
Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/
Discount Codes:
GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters, and today we
are diving into a story ofresilience, reinvention and
reclaiming identity afterchronic illness.
Our guest, shira Haidt, is amusician, a composer, writer and
artist whose life took anunexpected turn when she was
(00:20):
diagnosed with multipletick-borne illnesses, including
Lyme disease, babesia andBartonella.
Now, that's a little bit of amouthful.
Before getting sick, shira wasa clinical massage therapist
living independently in Chicago,balancing her career with her
love for the arts.
But when her health declined,she was forced to give up
(00:42):
everything Her career, herindependence and even her
ability to create.
For years, she struggled notjust with her physical health
but with the medical gaslighting, financial burdens and
emotional toll that come withchronic illnesses.
But now, after a decade-longbattle, shira is rediscovering
her voice, both literally andfiguratively.
(01:04):
She recently launched Lemon orLime, a vlog dedicated to
raising awareness, sharingresources and building a
supportive community for thosenavigating life with chronic
illness.
In this episode, cheryl opens upabout her journey from losing
everything to slowly rebuildingher life.
We talk about the challenges ofgetting diagnosed, the struggle
(01:27):
of being dismissed by doctorsand the power of reconnecting
with creativity after illness.
She shares the inspirationbehind Lemon or Lime, how she is
regaining her physical strength, and what it means to show up
for yourself, even on thehardest days.
If you've ever felt unheard,dismissed or like you've had to
start up for yourself, even onthe hardest days, if you've ever
(01:48):
felt unheard, dismissed or likeyou've had to start over from
scratch, this conversation isfor you.
So let's dive right in.
Speaker 2 (01:53):
Hi Shira how are you today Great?
Thank you so much for thatbeautiful introduction.
Speaker 1 (01:59):
And Lenea.
Thank you for joining as well.
Hopefully Andy can make it.
If not, she's with us as inspirit.
Can you share?
Speaker 3 (02:06):
a little bit about yourself, your passions,
background and what led you towhere you are today.
Speaker 2 (02:12):
Well, I got my BA in theater.
I got another BA in radiotalent and production.
So I didn't start in thesciences.
The sciences were not, didn'tseem like it was a possibility
for me, even though medicine isin the family.
And so, after you know college,then I went back to school for
(02:36):
clinical massage therapy andthat was really my first real
exposure to a lot of thesciences.
Because of the clinical programthat I did, it was required to
do biology, physiology,kinesiology, tons of anatomy, so
I really got a great foundationfor learning about the body.
(02:59):
I was working and, like you saidin the introduction and like
you said in the introduction,completely independent in
Chicago, really enjoying myfreedom and my independence and
my life.
And you know the problem withclinical massage therapy as much
as I loved it was the fact thatI couldn't make a living just
doing that one job.
(03:20):
So I added another job in 2014.
And it was in 2014 that Istarted to not feel good and at
first, me and my parents, we allthought that what I was feeling
was just extreme fatigue andjust being worn out because I
(03:42):
had been working so much and Iwas working seven days a week.
I never had a day off, maybe,like once a month I'd have a day
off.
So it really wasn't.
There was no work-life balanceat that point.
But when I first started tofeel sick, the first thing that
I felt was this extreme, extremefatigue, and immediately I
(04:04):
thought well, this kind of feelslike how I had mono in college.
I felt this tired, so Iimmediately go to the doctor to
get checked for mono.
But it was negative.
So I talked to my parents.
I would talk to them every day,sometimes more than once a day,
and so they were very in theloop as to like what was
(04:25):
happening.
After the extreme fatigue, thenext symptom was pain like
muscle and joint pain, which I'dnever really had.
But my clinical massage therapybrain was telling me well,
maybe I'm not taking care ofmyself, I'm just overworking
myself to death.
So I started putting thingsinto my life, like getting a
(04:47):
massage for myself, which a lotof therapists forget to do,
going to physical therapy twicea week.
I went to a nutritionist andtried different diets, and even
though I was putting in placeall of these positive things
that logically should havestarted to make me feel a little
better, I wasn't feeling better, I was feeling worse and the
(05:11):
symptoms just kept coming.
It was like it was thefloodgates just opened.
At first it started as a littletrickle and then it just kept
going.
My dad at the time he's retirednow, but he was a practicing
physician so whenever I calledmy parents, his brain is working
(05:33):
and thinking okay, what is theproblem here?
Yeah, so he kept having me goto my doctor or go see a
specialist, or here I'm going tomail you this test to take it
home and mail it in, and thenwe'll get the results back.
It was about a year and a halfof all of that and I was getting
(05:54):
worse and worse and worse andwe just couldn't figure out what
it was.
Speaker 3 (05:58):
Even having your own father as a physician, he was
even struggling.
Father as a physician, he waseven struggling.
And that I mean, I think thatputs perspective in to those
patients that don't havephysicians in their family.
You understand, absolutely no,they're most of them.
Speaker 2 (06:14):
Do try, not all of them, but most of them do right.
And, of course, you know my dad.
He's really trying because he'shearing me yeah, as I'm a baby
and like he's hearing mestruggling and they lived up in
Wisconsin at the time, so theywere a couple hours away, so it
(06:35):
got really bad.
When I went to stay with them,it was supposed to just be like
a two week break, you know, andleading up to the year and a
half that I was just kind ofgoing downhill.
I woke up one morning and Icouldn't move.
It was too painful to move.
So I and I remember it wasDecember 15th 2015.
(06:58):
It's like a date I will alwaysremember.
And my mom I called my mom rightaway and I'm crying because I'm
having trouble moving andgetting out of bed.
And she says okay, I want youto call your jobs all work and
let them know that you have totake a medical leave of absence.
And she said I will come getyou lay in bed as long as you
(07:21):
need to, and when I get there,we'll just pack a bag for two
weeks and you'll just come upand rest.
And that was 10 years ago, nine, 10 years ago.
I've been with them ever since.
Speaker 3 (07:33):
So I see in your background you have music and
theater and writing and visualarts.
How has that creative outletshaped your identity before and
then now?
Speaker 2 (07:46):
So before it was my entire identity.
I have, you know, sometimes Ihad a lot of creative people are
like this.
Sometimes I have troubleverbalizing what I want to say
or how I'm feeling, and that'swhen art comes in.
You know, because there are.
You know, I can sketchsomething.
I do more abstract work, so Ican sketch something.
(08:08):
That is is how I would describemyself at my core.
But even that last year and ahalf, two years that I was on my
(08:30):
own before I got sick, I hadalready stopped playing my music
and I had already stoppedwriting.
And then after and I was soafterwards, when I was finally
living with my parents, I didn'ttouch the piano and I didn't
touch my paints, or, you know,pick up my sketchbook or look at
(08:51):
any of my notebooks, it waslike it was like all a reminder
of everything I had lost and alife that I started playing my
music again and I've actuallywritten some new music, which is
something I haven't done in adecade.
Speaker 1 (09:10):
That's so tough.
That's so tough, I think, whenthere's something that we love,
that we enjoy and we'repassionate about and all of a
sudden we're finding this newnormal and we're feeling like
these things are ripped awayfrom us.
There's not really a great wayof describing that.
Right, your life has changedforever and now it's like okay,
(09:32):
do I?
Do I try to get back into thesethings and and find a way that
I can implement them in my lifeagain?
Or do I have to find somethingelse to be passionate about?
Speaker 2 (09:38):
Well, and and when I was in the thick of it and at my
worst, my mom because she knowsme so well, we're like best
friends she just she kept sayingto me why don't you go play the
piano, or what?
Because my parents had a babygrand.
Why don't you go play the piano?
Why don't you write some music?
Why don't you?
You know, she even mentionslike why don't you see if
(10:02):
there's any like communitytheater around here or something
?
And I just kept shaking my head, no, no.
And finally one day she asked mewhy don't you want to do your
music anymore?
And I said because there's nopoint.
You know, when you're in such adeep dark place and you can't
see any light down the tunnel,it's just black and you don't
(10:24):
know when or if this nightmarewill ever end.
For a very long time, mythought process was what is the
point?
There's no point in my artworkanymore, there's no point in
doing music anymore, becausethat's over.
This is my life.
Now I'm going to be sick and itwas really just a lot of
therapy that brought it, helpedme to bring it back and helped
(10:45):
me to put all of that back intomy life, which I feel has made
me feel more like myself againfor the first time in a long
time.
Speaker 3 (10:53):
I'm so glad you were able to get back into your music
because I have friends thathave different talents like that
and you can tell when they'renot doing it how much it affects
them and they don't see itbecause they don't realize it's
just part of their world, it'spart of their normal and not
having it.
I'm sure that affected you.
I'm so, I'm glad that you'rewriting again and playing, even
(11:17):
if I actually have.
Speaker 2 (11:19):
Yeah, totally, totally, and I actually.
So I was lived with my parentsfor and I still am living with
them.
So it's been a long time.
It's been 10 years now.
So I think it was once I wasdiagnosed and started treatment
and it had been a couple ofyears.
I had been in therapy for acouple of years.
I was up in Wisconsin with myparents and I didn't have any
(11:40):
friends.
I didn't have anyone there thatI knew that I wanted to hang
out with, and so I would kind oftag along with my parents
whenever they would go see theirfriends.
And one of their friends, hername was Linda.
She was a retired music teacher, and so one of the times my
parents and I were over at herhouse, she just kind of nudged
(12:01):
at me and was like so yourparents tell me that you're a
singer.
And I said, well, I was.
And she said you know, everwant to just sing something?
Call me and you can come overand we'll jam a little bit.
And it took me a couple ofyears to actually take her up on
her offer did I went to herhouse and I didn't have any of
(12:25):
my music books on me, becauseall of my stuff.
My entire apartment had been instorage for eight years at that
point, I think.
And so she says that's okay, Ihave tons of music.
And she says how about we justwarm up first?
So any singer out there knowsyou have to warm up before you
(12:46):
start singing.
It's like athletes stretchingkind of thing.
So I start doing my warm up andonce I get up to my sweet spot
of my range and you have tounderstand, I was classically
training in opera for six years,so I'm like like I don't just
sing in the shower kind ofsinger so we get up to my sweet
spot, where I feel the best, andthen I started crying and Linda
(13:10):
was like, are you okay?
And I said it's been a reallylong time.
And then she asked me you know,would you mind if I ask why you
haven't done any of your musicin this long?
And I said to her too, becauseI didn't see a point.
I think a lot of people, anyonewho becomes depressed, it's
(13:30):
easier to let those things fallaway, all the things that you
loved, because you're in such adeep hole that you can't imagine
those things, finding joy inthose things anymore, as opposed
to doing them and seeing a lifethat doesn't exist anymore.
Speaker 1 (13:50):
And I think sometimes we don't even notice that these
things are dropping out of ourlives.
Sometimes we're very aware, butoccasionally they just kind of
fade.
And then one day it's somebodyasking why haven't you been
doing X, Y or Z?
And that's when it clicks Wow,Wow, Like I haven't done this in
forever.
Now you're over at her houseand you're doing these warmups.
(14:12):
How did?
Speaker 2 (14:13):
you feel.
You know, maybe this is howrunners feel when they run.
When I sing, it's like a warmththroughout my whole body.
So I think, yeah, like I thinkthere's endorphins flying and
there's, you know, all kinds ofgood chemicals and those
chemicals I hadn't seen them ina while, the good chemicals.
So it was kind of an aha momentlike man, I really do have to
(14:36):
put this back in my life.
But the thing is with me is Iwill only full out sing my opera
and I will only do my beltingwith musical theater.
I'll only do that when myparents are at home.
It's just a weird thing that Ihave.
But yeah, but it does bring backsomething.
(14:57):
It is got to a place.
I got to a place where it was anice reminder of who I am at my
core and you know what this isimportant to bring back into my
life.
But yeah, I think since I sangat my parents' friend's house,
linda, that's when I started tojust kind of try and put these
(15:20):
things back into my life.
And I think that doing thethings that I love again, paired
with the therapy I love againpaired with the therapy, I think
that is what has made me feellike myself again.
Speaker 1 (15:40):
Okay, so before discovering that you have Lyme
disease, you were diagnosed withseveral other conditions, such
as fibromyalgia and chronicfatigue syndrome.
How did that affect your trustin the medical system?
Speaker 2 (15:48):
Oh, I mean.
So my dad's a doctor and mymother's a psychotherapist, so I
have always had a high regardand respect for people in the
medical field because I know howmuch training they have to do.
I understand all that.
So I've always kind of had themup on a pedestal.
(16:11):
But when I was getting thesediagnoses like fibromyalgia, I
even got diagnosed with plantarfasciitis.
What the doctors didn't knowwas that I was a clinical
massage therapist.
I know what those things arebecause many of my patients had
fibromyalgia or plantarfasciitis and so I knew what
(16:32):
those looked like.
And the picture of fibromyalgiaor plantar fasciitis did not
describe what I was feeling.
So I would you know, sometimesI would just kind of nod along
and say, okay, sometimes I wouldpolitely disagree and say you
know, this is not plantarfasciitis.
(16:53):
But a lot of doctors don't likewhen you correct them, which
I'm sure you all have hadexperience with.
Speaker 1 (17:00):
How did medical gaslighting that you experienced
, how did it impact your mentalhealth and your self-perception?
Speaker 2 (17:07):
I think that it made me worse.
I think it was almost like allof these digs over a period of
time.
It starts to chip away at youwhen it keeps happening over and
over.
And I remember the first time adoctor said to me that I was on
drugs.
I must be on drugs.
I started laughing at the guyand he was like you think this
(17:31):
is funny?
And I said you don't understand.
I am like the most straightlaced person.
I don't drink, I don't smoke, Idon't do anything.
I said so the fact that youthink I'm on something is kind
of funny.
And I said, and I bet I said no, no, you're convinced that you
know this about me after whatyou just met me three minutes
ago.
I bet you can't even pronouncemy name without looking at the
(17:54):
computer screen right now.
But you're certain that this istrue, that you have me pegged.
Yeah.
And I remember the guy.
He leaves the room for a minuteand I figured, ok, we're, we're
done, because I just insultedhim and he comes back in with
pamphlets of drug addict supportgroups.
So I kind of like pushed themaway back to him.
(18:16):
I said I don't need these.
And he says yeah, you do.
I said no, I don't.
And I threw them down on hiskeyboard and I left.
But the crappy thing, thereally infuriating thing, was
that I had to pay for that visit.
The really infuriating thingwas that I had to pay for that
visit.
That's the part that I'm likeman.
I can't even stick it to thisguy because I have a co-pay and
(18:37):
he's still going to get paid,even though he insulted me and
just threw out a label aftermeeting me for three minutes.
But that wasn't even the worst.
The second time I was accused ofbeing on drugs was when I had
already gone to visit not visitlive with my parents.
I had been with them for Idon't even know how many months.
(18:58):
I remember I just packed a bagfor two weeks.
So my parents started comingwith me to doctor's appointments
because at this point it wasreally in a bad way.
At this point in my illness westill didn't know what was going
on.
I was having trouble walkingand I was having trouble
speaking.
(19:18):
So my parents would come withme because I couldn't speak for
myself at this point and Icouldn't make decisions.
I was just in a constant fogand my cognitive abilities were
just not there.
So we're sitting in this examroom with a infectious disease
(19:42):
doctor and again we don't knowwhat's going on.
But my dad, he starts talkingdoctor to the infectious disease
doctor and is letting thedoctor know like okay, here's
where her white blood cell count, and here's this.
And we checked this and thiswas negative.
And this was negative.
And so, and then we gave theguy a whole list of all the meds
(20:03):
that I was on and all thesupplements that I was on.
And then the doctor says I wouldlike to ask Shira about her
sexual history.
So if you wouldn't mind, couldyou two go out in the hallway
and just give us a minute?
And my parents looked at me andI just nodded my head like yeah
, that's fine.
And so my parents went out intothe hallway and immediately the
(20:30):
doctor turns around, puts hisface in my face and says okay,
tell me what you're on.
And again, I'm having troublespeaking at this point.
So I just pointed to thecomputer screen and I said we
gave you what I'm on, like allof the meds.
And he says no, no, no, notthat Street drugs, what are you
(20:51):
on?
Speaker 1 (20:52):
Okay, so this happened to you not once, but
twice.
Speaker 2 (20:55):
Two different doctors what the hell is wrong with
them and I can't remember what Isaid.
I may have said nothing because, again, I was having trouble
communicating at this point, butas soon as we left I told my
parents what happened and I saidI'm never seeing that man again
.
So I have been gaslit indifferent ways.
(21:15):
The being accused of being ondrugs happened at least twice,
but I've been accused of allkinds of other things.
I've been accused of all ofthis being psychosomatic, as if
this is all like a hypochondriasituation or oh, you must be
looking for attention.
And I always thought that Ijust had really crappy luck with
(21:39):
doctors, because I always gotthese jerks, you know.
And it wasn't until after I gotdiagnosed and a few years after
that, that I finally found acommunity online of other Lyme's
to talk to that I finallyunderstood and realized that
other people were experiencingthe same thing, and what I was
(22:01):
experiencing was called medicalgaslighting, and it was
incredible not in a good way,but it was incredible to see
that, oh my God, this doesn'tjust happen to me, it's not just
bad luck.
Other people are experiencingthe same thing.
So that means that this is asystemic issue in the medical
(22:22):
community that they jump tolabel, criticize, shame, instead
of either figuring out what theissue really is or, two, saying
you know what?
I don't think I'm going to beable to help you, but let me
give you the name of someone orrefer you to someone who might.
So again, I've lived with myparents for 10 years now when
(22:49):
this kept happening to me, withdifferent doctors and different
things have been said.
One doctor told me how I shouldkill myself next time.
I know, I know the first thingthat I did when this guy.
(23:10):
I was meeting him for the firsttime because I was looking for
a new neurologist, because wehad moved.
And on the intake form theyalways ask you please list all
your medications and please listall the supplements you are
taking.
So when you have Lyme disease,there's a really long list.
So that is always what gives meaway as having some disease.
(23:33):
So the doctor looks at it andgoes what are you taking all
this for?
And I said I'm being treated forthree tick-borne illnesses, and
I purposely don't say Lymedisease out of the gate, because
just the words Lyme diseasescares the crap out of doctors.
It's a very weird thing to havehappen and it happens a lot,
(23:56):
unfortunately.
So when I say three tick-borneillnesses, they're a little bit
more accepting of that.
But he said Borreliaburgdorferi, what's that?
And I said that's Lyme disease.
That's when he flipped theswitch and changed his tune.
He called me a Lyme loony.
What he called me a Lyme loonyand he said you know, whoever's
(24:18):
treating you is just scammingyou for money.
I was trying to be very politebut also firm with him.
I said look, the fact that youdon't know what Borrelia
burgdorferi is tells me that youdon't know anything about Lyme
disease, because that is basic,that's what it's called.
So then he said oh well,there's no ticks around here,
(24:38):
you know that right.
And I said that's actually nottrue.
There's ticks.
I said we're in the Midwest,there are a lot of ticks here.
And I said does it help to saythat this is not a clinical
diagnosis?
I actually have blood work thatshows that I have these
diseases.
And so then this man he looksagain at my medication list and
(25:03):
he sees one of the medicationsthat I'm on for my migraines and
he says well, I want to get youoff of this.
And I said well, I don't wantto get off of it, because that
has been reducing my headacheseach month, and he said you know
?
First he asked me.
He says have you ever attemptedsuicide?
And I said yes, and he says youknow, all you have to do is
(25:25):
take a bottle of this and you'redone, you're gone.
So, needless to say, I reportedthat man to the state.
Of course, I never heardanything about it, so he's
probably still working, but it'sreally alarming to hear how
doctors treat people with achronic illness, especially if
they don't know anything aboutthe chronic illness.
Speaker 1 (25:47):
What was the turning point where you decided to trust
yourself and to keep searchingfor the right answers and the
right practitioner?
Speaker 2 (25:55):
Certainly, with tick-borne illnesses it's very
hard to find a practitioner.
A lot of it is word of mouthand just doing your own research
online ILADS, which is theInternational Lyme and
Associated Disease Society.
They have a search function ontheir website so that you can
find a practitioner, but everypractitioner is unfortunately
(26:16):
not in this list.
So I literally have found mycurrent one I found through a
Google search and once you'vehad it a while, you kind of know
what you're looking for in away, and I always call the
practitioner's office to ask acouple questions like what
guidelines do you use?
What do you treat solely withantibiotics or do you do a
(26:40):
combination of antibiotics andherbals?
Those are things that areimportant to ask when you're
looking for a practitioner inthe tick-borne illness field.
It was the second practitionerthat I had was actually it was
because of him that I gotdiagnosed and I'm not going to
say his name because he doesn'tactually work in the field
(27:02):
anymore.
During COVID he kind of lefthis tick-borne disease practice
and started treating COVIDpatients.
But when I had come up with myparents, to my parents and was
staying with them and you knowwe're going to doctors probably
once a week I am sleeping 20some hours a day and, like I
said, I was having troublewalking, speaking.
(27:24):
I just was not there anymore.
My dad, who was still practicingat the time, he went to a
conference and at the conferencehe ran into this guy and the
two of them kind of becamebuddies.
They were lunch buddiestogether at the conference and
so my dad started sharing withthis man all the things that
(27:47):
were going on with me.
And this man was listening andhe said you know, your daughter
may have Lyme disease.
So the man recommended a book.
I actually have the book righthere.
This is like the Bible for us.
It's called why Can't I GetBetter by Dr Richard Horowitz.
So the guy suggested that youknow, we get this book, and so
(28:08):
my dad did.
He read through it and therewas a questionnaire by the same
doctor, dr Richard Horowitz,that is actually used kind of as
a diagnostic tool, because theother diagnostic tools don't
work so well.
This questionnaire is prettycomprehensive.
So reading this book and ofcourse I couldn't read it at the
(28:28):
time because of how foggy I wasbut this man, he guided us to
this book and he guided us tothis diagnosis, even though when
I was still in Chicago, I didget a Lyme disease test, but it
was negative, and that happens alot with the current diagnostic
tools, which is a two-tiertesting.
(28:50):
A lot of people get falsenegatives or false positives and
it's really not accurate, butfor some reason the CDC still
recommends using it, even thoughit doesn't have a very good
track record.
Speaker 3 (29:08):
Okay, so the financial burden of chronic
illness is often overlooked alot in the health industry and
in our lives.
How have you navigated thechallenges of accessing
treatment that isn't covered byinsurance?
Speaker 2 (29:26):
Yes, yeah, I'm really glad you brought that up,
because, even though the CDCcame out in late 2023 and
admitted that, oh yeah, Lymedisease can be chronic, For
years and years they were saying, no, it's not chronic.
All of these patients are crazyor they're making it up or
they're complaining or whatever.
(29:47):
So the CDC has finally admittedyes, this is chronic.
Now the problem is thatinsurance hasn't caught up to
that and so every single thingthat a patient needs to combat
tick-borne diseases is notcovered.
So that means blood tests, thatmeans doctor visits and
(30:09):
follow-up visits, and then allof the medications, which I
actually just put up on myInstagram what my meds look like
.
I have an entire pull-outcabinet and then a drawer on top
full of meds, and those arecurrent meds.
So, seeing that people shouldunderstand that every single
(30:29):
thing is paid out of pocketInsurance companies even if you
submit to insurance companiesafterwards like a super bill or
something from your practitioner, they're not going to cover it
because you're being treated forLyme disease or another
tick-borne disease.
I think part of that ismisinformation and
(30:51):
misunderstanding that thesediseases are serious.
They're life-altering andoftentimes debilitating.
Many people who come down witha tick-borne disease, many
people have to quit their jobs.
Many people end up ondisability, like myself.
Many people start to have toneed mobility aids and all kinds
(31:12):
of assistance and the fact thatall of that assistance is not
covered.
It's awful, and luckily myparents have been in a position
that we have been able to affordeverything out of pocket.
It's probably, over the last 10years, been tens of thousands
of dollars, maybe hundreds ofthousands of dollars at this
(31:33):
point, and people are goingbroke because they can't afford
this and once they stoptreatment or maybe they couldn't
start treatment to begin withbecause it's not covered they
get sicker and sicker.
So it's really not good.
I wish that insurance companieswould change their tune and
recognize that these diseasesare serious and debilitating and
(31:58):
people need help.
Speaker 3 (31:58):
Yeah, I understand that Even with RA there's stuff
I use that's not paid for byinsurance.
Speaker 2 (32:08):
It doesn't make any sense.
I think we all have differentdiseases.
Speaker 1 (32:11):
Yeah.
Speaker 3 (32:12):
We use tools that make us feel better, because
medication isn't always thecomplete answer to feel better.
Right, right, I feel bad thatevery person with Lyme disease
isn't covered, which isridiculous.
That's another story.
Speaker 2 (32:27):
There are a lot of people who try and do this
themselves.
I don't know how they're doingit.
I've heard of people using chat, GBT to create a protocol
because they can't afford to goto a professional.
So they're trying to do itthemselves, which I mean.
I've been studying this stufffor a decade now and I still
(32:47):
wouldn't be able to do it.
I can understand a lot of theseconcepts, but to try and build
a protocol and then continue toadjust it depending on how your
symptoms ebb and flow, it to mewould be impossible.
But I know people do it becausethat's the only option.
Speaker 3 (33:06):
Exactly it is.
So that kind of goes into mynext question about nutrition.
I'm going to make it kind of atwo part.
You've lost.
So you've said you've lost 70pounds after gaining over 100 in
the early stages of yourillness.
I can understand that I havelost about that much over the
last few years.
(33:26):
Awesome, so it's hard.
Oh my God.
Yes.
What has helped you the most toprioritize your health again,
and how does nutrition play ahuge role in your chronic
illness management?
Speaker 2 (33:39):
So with tick-borne diseases as well as a lot of
other chronic illnesses, ananti-inflammatory diet is
recommended.
You know a lot of us withchronic illnesses we have a lot
of inflammation because ourbodies are tripping out, and
that is the body.
But more than one practitionerthat I've had has wanted me to
(34:17):
add animal protein because a lotof the meds that I'm on work
better with animal protein.
So, despite my love for animals, I have put back some animal
protein.
I eat poultry now, but that isthe food.
The intake and what you'reintaking has been the only way
(34:39):
that I was able to get down onthe scale Because, like a lot of
people with chronic illnesses,exercising is just not possible.
A lot of us have thatpost-exertional malaise.
A lot of people have that, andmy problem was not only the
malaise afterwards and theextreme fatigue, but it would be
(34:59):
pain for days afterwards andeven if I wasn't doing anything
very rigorous, if I was, just mymom kept trying to get me
outside and like walk a block.
It was very hard to do becauseit was so painful.
And so most of the weight thatI have lost has been more about
(35:20):
portion control, which is hard,because I love bread and
sandwiches and sweets and youknow.
But yeah, I gained so much fat,all the good stuff.
I gained so much weight, youknow, because of the illness.
And then I also was living withmom again and mom is an amazing
baker, so she was baking allthe time trying to make me feel
(35:41):
better.
So I'm sure that the cookiesand brownies didn't help, but
not moving was the biggestproblem.
Speaker 1 (35:48):
We have so enjoyed having you on Shiraira.
Thank you and actually surprise.
We're going to have you comeback next week for part two.
Stay tuned and until next time,don't forget your spoon.
Welcome back to my Spoonie Sisters, and today we
are diving into a story ofresilience, reinvention and
reclaiming identity afterchronic illness.
Our guest, shira Haidt, is amusician, a composer, writer and
artist whose life took anunexpected turn when she was
(00:20):
diagnosed with multipletick-borne illnesses, including
Lyme disease, babesia andBartonella.
Now, that's a little bit of amouthful.
Before getting sick, shira wasa clinical massage therapist
living independently in Chicago,balancing her career with her
love for the arts.
But when her health declined,she was forced to give up
(00:42):
everything Her career, herindependence and even her
ability to create.
For years, she struggled notjust with her physical health
but with the medical gaslighting, financial burdens and
emotional toll that come withchronic illnesses.
But now, after a decade-longbattle, shira is rediscovering
her voice, both literally andfiguratively.
(01:04):
She recently launched Lemon orLime, a vlog dedicated to
raising awareness, sharingresources and building a
supportive community for thosenavigating life with chronic
illness.
In this episode, cheryl opens upabout her journey from losing
everything to slowly rebuildingher life.
We talk about the challenges ofgetting diagnosed, the struggle
(01:27):
of being dismissed by doctorsand the power of reconnecting
with creativity after illness.
She shares the inspirationbehind Lemon or Lime, how she is
regaining her physical strength, and what it means to show up
for yourself, even on thehardest days.
If you've ever felt unheard,dismissed or like you've had to
start up for yourself, even onthe hardest days, if you've ever
(01:48):
felt unheard, dismissed or likeyou've had to start over from
scratch, this conversation isfor you.
So let's dive right in.
Speaker 2 (01:53):
Hi Shira how are you today Great?
Thank you so much for thatbeautiful introduction.
Speaker 1 (01:59):
And Lenea.
Thank you for joining as well.
Hopefully Andy can make it.
If not, she's with us as inspirit.
Can you share?
Speaker 3 (02:06):
a little bit about yourself, your passions,
background and what led you towhere you are today.
Speaker 2 (02:12):
Well, I got my BA in theater.
I got another BA in radiotalent and production.
So I didn't start in thesciences.
The sciences were not, didn'tseem like it was a possibility
for me, even though medicine isin the family.
And so, after you know college,then I went back to school for
(02:36):
clinical massage therapy andthat was really my first real
exposure to a lot of thesciences.
Because of the clinical programthat I did, it was required to
do biology, physiology,kinesiology, tons of anatomy, so
I really got a great foundationfor learning about the body.
(02:59):
I was working and, like you saidin the introduction and like
you said in the introduction,completely independent in
Chicago, really enjoying myfreedom and my independence and
my life.
And you know the problem withclinical massage therapy as much
as I loved it was the fact thatI couldn't make a living just
doing that one job.
(03:20):
So I added another job in 2014.
And it was in 2014 that Istarted to not feel good and at
first, me and my parents, we allthought that what I was feeling
was just extreme fatigue andjust being worn out because I
(03:42):
had been working so much and Iwas working seven days a week.
I never had a day off, maybe,like once a month I'd have a day
off.
So it really wasn't.
There was no work-life balanceat that point.
But when I first started tofeel sick, the first thing that
I felt was this extreme, extremefatigue, and immediately I
(04:04):
thought well, this kind of feelslike how I had mono in college.
I felt this tired, so Iimmediately go to the doctor to
get checked for mono.
But it was negative.
So I talked to my parents.
I would talk to them every day,sometimes more than once a day,
and so they were very in theloop as to like what was
(04:25):
happening.
After the extreme fatigue, thenext symptom was pain like
muscle and joint pain, which I'dnever really had.
But my clinical massage therapybrain was telling me well,
maybe I'm not taking care ofmyself, I'm just overworking
myself to death.
So I started putting thingsinto my life, like getting a
(04:47):
massage for myself, which a lotof therapists forget to do,
going to physical therapy twicea week.
I went to a nutritionist andtried different diets, and even
though I was putting in placeall of these positive things
that logically should havestarted to make me feel a little
better, I wasn't feeling better, I was feeling worse and the
(05:11):
symptoms just kept coming.
It was like it was thefloodgates just opened.
At first it started as a littletrickle and then it just kept
going.
My dad at the time he's retirednow, but he was a practicing
physician so whenever I calledmy parents, his brain is working
(05:33):
and thinking okay, what is theproblem here?
Yeah, so he kept having me goto my doctor or go see a
specialist, or here I'm going tomail you this test to take it
home and mail it in, and thenwe'll get the results back.
It was about a year and a halfof all of that and I was getting
(05:54):
worse and worse and worse andwe just couldn't figure out what
it was.
Speaker 3 (05:58):
Even having your own father as a physician, he was
even struggling.
Father as a physician, he waseven struggling.
And that I mean, I think thatputs perspective in to those
patients that don't havephysicians in their family.
You understand, absolutely no,they're most of them.
Speaker 2 (06:14):
Do try, not all of them, but most of them do right.
And, of course, you know my dad.
He's really trying because he'shearing me yeah, as I'm a baby
and like he's hearing mestruggling and they lived up in
Wisconsin at the time, so theywere a couple hours away, so it
(06:35):
got really bad.
When I went to stay with them,it was supposed to just be like
a two week break, you know, andleading up to the year and a
half that I was just kind ofgoing downhill.
I woke up one morning and Icouldn't move.
It was too painful to move.
So I and I remember it wasDecember 15th 2015.
(06:58):
It's like a date I will alwaysremember.
And my mom I called my mom rightaway and I'm crying because I'm
having trouble moving andgetting out of bed.
And she says okay, I want youto call your jobs all work and
let them know that you have totake a medical leave of absence.
And she said I will come getyou lay in bed as long as you
(07:21):
need to, and when I get there,we'll just pack a bag for two
weeks and you'll just come upand rest.
And that was 10 years ago, nine, 10 years ago.
I've been with them ever since.
Speaker 3 (07:33):
So I see in your background you have music and
theater and writing and visualarts.
How has that creative outletshaped your identity before and
then now?
Speaker 2 (07:46):
So before it was my entire identity.
I have, you know, sometimes Ihad a lot of creative people are
like this.
Sometimes I have troubleverbalizing what I want to say
or how I'm feeling, and that'swhen art comes in.
You know, because there are.
You know, I can sketchsomething.
I do more abstract work, so Ican sketch something.
(08:08):
That is is how I would describemyself at my core.
But even that last year and ahalf, two years that I was on my
(08:30):
own before I got sick, I hadalready stopped playing my music
and I had already stoppedwriting.
And then after and I was soafterwards, when I was finally
living with my parents, I didn'ttouch the piano and I didn't
touch my paints, or, you know,pick up my sketchbook or look at
(08:51):
any of my notebooks, it waslike it was like all a reminder
of everything I had lost and alife that I started playing my
music again and I've actuallywritten some new music, which is
something I haven't done in adecade.
Speaker 1 (09:10):
That's so tough.
That's so tough, I think, whenthere's something that we love,
that we enjoy and we'repassionate about and all of a
sudden we're finding this newnormal and we're feeling like
these things are ripped awayfrom us.
There's not really a great wayof describing that.
Right, your life has changedforever and now it's like okay,
(09:32):
do I?
Do I try to get back into thesethings and and find a way that
I can implement them in my lifeagain?
Or do I have to find somethingelse to be passionate about?
Speaker 2 (09:38):
Well, and and when I was in the thick of it and at my
worst, my mom because she knowsme so well, we're like best
friends she just she kept sayingto me why don't you go play the
piano, or what?
Because my parents had a babygrand.
Why don't you go play the piano?
Why don't you write some music?
Why don't you?
You know, she even mentionslike why don't you see if
(10:02):
there's any like communitytheater around here or something
?
And I just kept shaking my head, no, no.
And finally one day she asked mewhy don't you want to do your
music anymore?
And I said because there's nopoint.
You know, when you're in such adeep dark place and you can't
see any light down the tunnel,it's just black and you don't
(10:24):
know when or if this nightmarewill ever end.
For a very long time, mythought process was what is the
point?
There's no point in my artworkanymore, there's no point in
doing music anymore, becausethat's over.
This is my life.
Now I'm going to be sick and itwas really just a lot of
therapy that brought it, helpedme to bring it back and helped
(10:45):
me to put all of that back intomy life, which I feel has made
me feel more like myself againfor the first time in a long
time.
Speaker 3 (10:53):
I'm so glad you were able to get back into your music
because I have friends thathave different talents like that
and you can tell when they'renot doing it how much it affects
them and they don't see itbecause they don't realize it's
just part of their world, it'spart of their normal and not
having it.
I'm sure that affected you.
I'm so, I'm glad that you'rewriting again and playing, even
(11:17):
if I actually have.
Speaker 2 (11:19):
Yeah, totally, totally, and I actually.
So I was lived with my parentsfor and I still am living with
them.
So it's been a long time.
It's been 10 years now.
So I think it was once I wasdiagnosed and started treatment
and it had been a couple ofyears.
I had been in therapy for acouple of years.
I was up in Wisconsin with myparents and I didn't have any
(11:40):
friends.
I didn't have anyone there thatI knew that I wanted to hang
out with, and so I would kind oftag along with my parents
whenever they would go see theirfriends.
And one of their friends, hername was Linda.
She was a retired music teacher, and so one of the times my
parents and I were over at herhouse, she just kind of nudged
(12:01):
at me and was like so yourparents tell me that you're a
singer.
And I said, well, I was.
And she said you know, everwant to just sing something?
Call me and you can come overand we'll jam a little bit.
And it took me a couple ofyears to actually take her up on
her offer did I went to herhouse and I didn't have any of
(12:25):
my music books on me, becauseall of my stuff.
My entire apartment had been instorage for eight years at that
point, I think.
And so she says that's okay, Ihave tons of music.
And she says how about we justwarm up first?
So any singer out there knowsyou have to warm up before you
(12:46):
start singing.
It's like athletes stretchingkind of thing.
So I start doing my warm up andonce I get up to my sweet spot
of my range and you have tounderstand, I was classically
training in opera for six years,so I'm like like I don't just
sing in the shower kind ofsinger so we get up to my sweet
spot, where I feel the best, andthen I started crying and Linda
(13:10):
was like, are you okay?
And I said it's been a reallylong time.
And then she asked me you know,would you mind if I ask why you
haven't done any of your musicin this long?
And I said to her too, becauseI didn't see a point.
I think a lot of people, anyonewho becomes depressed, it's
(13:30):
easier to let those things fallaway, all the things that you
loved, because you're in such adeep hole that you can't imagine
those things, finding joy inthose things anymore, as opposed
to doing them and seeing a lifethat doesn't exist anymore.
Speaker 1 (13:50):
And I think sometimes we don't even notice that these
things are dropping out of ourlives.
Sometimes we're very aware, butoccasionally they just kind of
fade.
And then one day it's somebodyasking why haven't you been
doing X, Y or Z?
And that's when it clicks Wow,Wow, Like I haven't done this in
forever.
Now you're over at her houseand you're doing these warmups.
(14:12):
How did?
Speaker 2 (14:13):
you feel.
You know, maybe this is howrunners feel when they run.
When I sing, it's like a warmththroughout my whole body.
So I think, yeah, like I thinkthere's endorphins flying and
there's, you know, all kinds ofgood chemicals and those
chemicals I hadn't seen them ina while, the good chemicals.
So it was kind of an aha momentlike man, I really do have to
(14:36):
put this back in my life.
But the thing is with me is Iwill only full out sing my opera
and I will only do my beltingwith musical theater.
I'll only do that when myparents are at home.
It's just a weird thing that Ihave.
But yeah, but it does bring backsomething.
(14:57):
It is got to a place.
I got to a place where it was anice reminder of who I am at my
core and you know what this isimportant to bring back into my
life.
But yeah, I think since I sangat my parents' friend's house,
linda, that's when I started tojust kind of try and put these
(15:20):
things back into my life.
And I think that doing thethings that I love again, paired
with the therapy I love againpaired with the therapy, I think
that is what has made me feellike myself again.
Speaker 1 (15:40):
Okay, so before discovering that you have Lyme
disease, you were diagnosed withseveral other conditions, such
as fibromyalgia and chronicfatigue syndrome.
How did that affect your trustin the medical system?
Speaker 2 (15:48):
Oh, I mean.
So my dad's a doctor and mymother's a psychotherapist, so I
have always had a high regardand respect for people in the
medical field because I know howmuch training they have to do.
I understand all that.
So I've always kind of had themup on a pedestal.
(16:11):
But when I was getting thesediagnoses like fibromyalgia, I
even got diagnosed with plantarfasciitis.
What the doctors didn't knowwas that I was a clinical
massage therapist.
I know what those things arebecause many of my patients had
fibromyalgia or plantarfasciitis and so I knew what
(16:32):
those looked like.
And the picture of fibromyalgiaor plantar fasciitis did not
describe what I was feeling.
So I would you know, sometimesI would just kind of nod along
and say, okay, sometimes I wouldpolitely disagree and say you
know, this is not plantarfasciitis.
(16:53):
But a lot of doctors don't likewhen you correct them, which
I'm sure you all have hadexperience with.
Speaker 1 (17:00):
How did medical gaslighting that you experienced
, how did it impact your mentalhealth and your self-perception?
Speaker 2 (17:07):
I think that it made me worse.
I think it was almost like allof these digs over a period of
time.
It starts to chip away at youwhen it keeps happening over and
over.
And I remember the first time adoctor said to me that I was on
drugs.
I must be on drugs.
I started laughing at the guyand he was like you think this
(17:31):
is funny?
And I said you don't understand.
I am like the most straightlaced person.
I don't drink, I don't smoke, Idon't do anything.
I said so the fact that youthink I'm on something is kind
of funny.
And I said, and I bet I said no, no, you're convinced that you
know this about me after whatyou just met me three minutes
ago.
I bet you can't even pronouncemy name without looking at the
(17:54):
computer screen right now.
But you're certain that this istrue, that you have me pegged.
Yeah.
And I remember the guy.
He leaves the room for a minuteand I figured, ok, we're, we're
done, because I just insultedhim and he comes back in with
pamphlets of drug addict supportgroups.
So I kind of like pushed themaway back to him.
(18:16):
I said I don't need these.
And he says yeah, you do.
I said no, I don't.
And I threw them down on hiskeyboard and I left.
But the crappy thing, thereally infuriating thing, was
that I had to pay for that visit.
The really infuriating thingwas that I had to pay for that
visit.
That's the part that I'm likeman.
I can't even stick it to thisguy because I have a co-pay and
(18:37):
he's still going to get paid,even though he insulted me and
just threw out a label aftermeeting me for three minutes.
But that wasn't even the worst.
The second time I was accused ofbeing on drugs was when I had
already gone to visit not visitlive with my parents.
I had been with them for Idon't even know how many months.
(18:58):
I remember I just packed a bagfor two weeks.
So my parents started comingwith me to doctor's appointments
because at this point it wasreally in a bad way.
At this point in my illness westill didn't know what was going
on.
I was having trouble walkingand I was having trouble
speaking.
(19:18):
So my parents would come withme because I couldn't speak for
myself at this point and Icouldn't make decisions.
I was just in a constant fogand my cognitive abilities were
just not there.
So we're sitting in this examroom with a infectious disease
(19:42):
doctor and again we don't knowwhat's going on.
But my dad, he starts talkingdoctor to the infectious disease
doctor and is letting thedoctor know like okay, here's
where her white blood cell count, and here's this.
And we checked this and thiswas negative.
And this was negative.
And so, and then we gave theguy a whole list of all the meds
(20:03):
that I was on and all thesupplements that I was on.
And then the doctor says I wouldlike to ask Shira about her
sexual history.
So if you wouldn't mind, couldyou two go out in the hallway
and just give us a minute?
And my parents looked at me andI just nodded my head like yeah
, that's fine.
And so my parents went out intothe hallway and immediately the
(20:30):
doctor turns around, puts hisface in my face and says okay,
tell me what you're on.
And again, I'm having troublespeaking at this point.
So I just pointed to thecomputer screen and I said we
gave you what I'm on, like allof the meds.
And he says no, no, no, notthat Street drugs, what are you
(20:51):
on?
Speaker 1 (20:52):
Okay, so this happened to you not once, but
twice.
Speaker 2 (20:55):
Two different doctors what the hell is wrong with
them and I can't remember what Isaid.
I may have said nothing because, again, I was having trouble
communicating at this point, butas soon as we left I told my
parents what happened and I saidI'm never seeing that man again
.
So I have been gaslit indifferent ways.
(21:15):
The being accused of being ondrugs happened at least twice,
but I've been accused of allkinds of other things.
I've been accused of all ofthis being psychosomatic, as if
this is all like a hypochondriasituation or oh, you must be
looking for attention.
And I always thought that Ijust had really crappy luck with
(21:39):
doctors, because I always gotthese jerks, you know.
And it wasn't until after I gotdiagnosed and a few years after
that, that I finally found acommunity online of other Lyme's
to talk to that I finallyunderstood and realized that
other people were experiencingthe same thing, and what I was
(22:01):
experiencing was called medicalgaslighting, and it was
incredible not in a good way,but it was incredible to see
that, oh my God, this doesn'tjust happen to me, it's not just
bad luck.
Other people are experiencingthe same thing.
So that means that this is asystemic issue in the medical
(22:22):
community that they jump tolabel, criticize, shame, instead
of either figuring out what theissue really is or, two, saying
you know what?
I don't think I'm going to beable to help you, but let me
give you the name of someone orrefer you to someone who might.
So again, I've lived with myparents for 10 years now when
(22:49):
this kept happening to me, withdifferent doctors and different
things have been said.
One doctor told me how I shouldkill myself next time.
I know, I know the first thingthat I did when this guy.
(23:10):
I was meeting him for the firsttime because I was looking for
a new neurologist, because wehad moved.
And on the intake form theyalways ask you please list all
your medications and please listall the supplements you are
taking.
So when you have Lyme disease,there's a really long list.
So that is always what gives meaway as having some disease.
(23:33):
So the doctor looks at it andgoes what are you taking all
this for?
And I said I'm being treated forthree tick-borne illnesses, and
I purposely don't say Lymedisease out of the gate, because
just the words Lyme diseasescares the crap out of doctors.
It's a very weird thing to havehappen and it happens a lot,
(23:56):
unfortunately.
So when I say three tick-borneillnesses, they're a little bit
more accepting of that.
But he said Borreliaburgdorferi, what's that?
And I said that's Lyme disease.
That's when he flipped theswitch and changed his tune.
He called me a Lyme loony.
What he called me a Lyme loonyand he said you know, whoever's
(24:18):
treating you is just scammingyou for money.
I was trying to be very politebut also firm with him.
I said look, the fact that youdon't know what Borrelia
burgdorferi is tells me that youdon't know anything about Lyme
disease, because that is basic,that's what it's called.
So then he said oh well,there's no ticks around here,
(24:38):
you know that right.
And I said that's actually nottrue.
There's ticks.
I said we're in the Midwest,there are a lot of ticks here.
And I said does it help to saythat this is not a clinical
diagnosis?
I actually have blood work thatshows that I have these
diseases.
And so then this man he looksagain at my medication list and
(25:03):
he sees one of the medicationsthat I'm on for my migraines and
he says well, I want to get youoff of this.
And I said well, I don't wantto get off of it, because that
has been reducing my headacheseach month, and he said you know
?
First he asked me.
He says have you ever attemptedsuicide?
And I said yes, and he says youknow, all you have to do is
(25:25):
take a bottle of this and you'redone, you're gone.
So, needless to say, I reportedthat man to the state.
Of course, I never heardanything about it, so he's
probably still working, but it'sreally alarming to hear how
doctors treat people with achronic illness, especially if
they don't know anything aboutthe chronic illness.
Speaker 1 (25:47):
What was the turning point where you decided to trust
yourself and to keep searchingfor the right answers and the
right practitioner?
Speaker 2 (25:55):
Certainly, with tick-borne illnesses it's very
hard to find a practitioner.
A lot of it is word of mouthand just doing your own research
online ILADS, which is theInternational Lyme and
Associated Disease Society.
They have a search function ontheir website so that you can
find a practitioner, but everypractitioner is unfortunately
(26:16):
not in this list.
So I literally have found mycurrent one I found through a
Google search and once you'vehad it a while, you kind of know
what you're looking for in away, and I always call the
practitioner's office to ask acouple questions like what
guidelines do you use?
What do you treat solely withantibiotics or do you do a
(26:40):
combination of antibiotics andherbals?
Those are things that areimportant to ask when you're
looking for a practitioner inthe tick-borne illness field.
It was the second practitionerthat I had was actually it was
because of him that I gotdiagnosed and I'm not going to
say his name because he doesn'tactually work in the field
(27:02):
anymore.
During COVID he kind of lefthis tick-borne disease practice
and started treating COVIDpatients.
But when I had come up with myparents, to my parents and was
staying with them and you knowwe're going to doctors probably
once a week I am sleeping 20some hours a day and, like I
said, I was having troublewalking, speaking.
(27:24):
I just was not there anymore.
My dad, who was still practicingat the time, he went to a
conference and at the conferencehe ran into this guy and the
two of them kind of becamebuddies.
They were lunch buddiestogether at the conference and
so my dad started sharing withthis man all the things that
(27:47):
were going on with me.
And this man was listening andhe said you know, your daughter
may have Lyme disease.
So the man recommended a book.
I actually have the book righthere.
This is like the Bible for us.
It's called why Can't I GetBetter by Dr Richard Horowitz.
So the guy suggested that youknow, we get this book, and so
(28:08):
my dad did.
He read through it and therewas a questionnaire by the same
doctor, dr Richard Horowitz,that is actually used kind of as
a diagnostic tool, because theother diagnostic tools don't
work so well.
This questionnaire is prettycomprehensive.
So reading this book and ofcourse I couldn't read it at the
(28:28):
time because of how foggy I wasbut this man, he guided us to
this book and he guided us tothis diagnosis, even though when
I was still in Chicago, I didget a Lyme disease test, but it
was negative, and that happens alot with the current diagnostic
tools, which is a two-tiertesting.
(28:50):
A lot of people get falsenegatives or false positives and
it's really not accurate, butfor some reason the CDC still
recommends using it, even thoughit doesn't have a very good
track record.
Speaker 3 (29:08):
Okay, so the financial burden of chronic
illness is often overlooked alot in the health industry and
in our lives.
How have you navigated thechallenges of accessing
treatment that isn't covered byinsurance?
Speaker 2 (29:26):
Yes, yeah, I'm really glad you brought that up,
because, even though the CDCcame out in late 2023 and
admitted that, oh yeah, Lymedisease can be chronic, For
years and years they were saying, no, it's not chronic.
All of these patients are crazyor they're making it up or
they're complaining or whatever.
(29:47):
So the CDC has finally admittedyes, this is chronic.
Now the problem is thatinsurance hasn't caught up to
that and so every single thingthat a patient needs to combat
tick-borne diseases is notcovered.
So that means blood tests, thatmeans doctor visits and
(30:09):
follow-up visits, and then allof the medications, which I
actually just put up on myInstagram what my meds look like
.
I have an entire pull-outcabinet and then a drawer on top
full of meds, and those arecurrent meds.
So, seeing that people shouldunderstand that every single
(30:29):
thing is paid out of pocketInsurance companies even if you
submit to insurance companiesafterwards like a super bill or
something from your practitioner, they're not going to cover it
because you're being treated forLyme disease or another
tick-borne disease.
I think part of that ismisinformation and
(30:51):
misunderstanding that thesediseases are serious.
They're life-altering andoftentimes debilitating.
Many people who come down witha tick-borne disease, many
people have to quit their jobs.
Many people end up ondisability, like myself.
Many people start to have toneed mobility aids and all kinds
(31:12):
of assistance and the fact thatall of that assistance is not
covered.
It's awful, and luckily myparents have been in a position
that we have been able to affordeverything out of pocket.
It's probably, over the last 10years, been tens of thousands
of dollars, maybe hundreds ofthousands of dollars at this
(31:33):
point, and people are goingbroke because they can't afford
this and once they stoptreatment or maybe they couldn't
start treatment to begin withbecause it's not covered they
get sicker and sicker.
So it's really not good.
I wish that insurance companieswould change their tune and
recognize that these diseasesare serious and debilitating and
(31:58):
people need help.
Speaker 3 (31:58):
Yeah, I understand that Even with RA there's stuff
I use that's not paid for byinsurance.
Speaker 2 (32:08):
It doesn't make any sense.
I think we all have differentdiseases.
Speaker 1 (32:11):
Yeah.
Speaker 3 (32:12):
We use tools that make us feel better, because
medication isn't always thecomplete answer to feel better.
Right, right, I feel bad thatevery person with Lyme disease
isn't covered, which isridiculous.
That's another story.
Speaker 2 (32:27):
There are a lot of people who try and do this
themselves.
I don't know how they're doingit.
I've heard of people using chat, GBT to create a protocol
because they can't afford to goto a professional.
So they're trying to do itthemselves, which I mean.
I've been studying this stufffor a decade now and I still
(32:47):
wouldn't be able to do it.
I can understand a lot of theseconcepts, but to try and build
a protocol and then continue toadjust it depending on how your
symptoms ebb and flow, it to mewould be impossible.
But I know people do it becausethat's the only option.
Speaker 3 (33:06):
Exactly it is.
So that kind of goes into mynext question about nutrition.
I'm going to make it kind of atwo part.
You've lost.
So you've said you've lost 70pounds after gaining over 100 in
the early stages of yourillness.
I can understand that I havelost about that much over the
last few years.
(33:26):
Awesome, so it's hard.
Oh my God.
Yes.
What has helped you the most toprioritize your health again,
and how does nutrition play ahuge role in your chronic
illness management?
Speaker 2 (33:39):
So with tick-borne diseases as well as a lot of
other chronic illnesses, ananti-inflammatory diet is
recommended.
You know a lot of us withchronic illnesses we have a lot
of inflammation because ourbodies are tripping out, and
that is the body.
But more than one practitionerthat I've had has wanted me to
(34:17):
add animal protein because a lotof the meds that I'm on work
better with animal protein.
So, despite my love for animals, I have put back some animal
protein.
I eat poultry now, but that isthe food.
The intake and what you'reintaking has been the only way
(34:39):
that I was able to get down onthe scale Because, like a lot of
people with chronic illnesses,exercising is just not possible.
A lot of us have thatpost-exertional malaise.
A lot of people have that, andmy problem was not only the
malaise afterwards and theextreme fatigue, but it would be
(34:59):
pain for days afterwards andeven if I wasn't doing anything
very rigorous, if I was, just mymom kept trying to get me
outside and like walk a block.
It was very hard to do becauseit was so painful.
And so most of the weight thatI have lost has been more about
(35:20):
portion control, which is hard,because I love bread and
sandwiches and sweets and youknow.
But yeah, I gained so much fat,all the good stuff.
I gained so much weight, youknow, because of the illness.
And then I also was living withmom again and mom is an amazing
baker, so she was baking allthe time trying to make me feel
(35:41):
better.
So I'm sure that the cookiesand brownies didn't help, but
not moving was the biggestproblem.
Speaker 1 (35:48):
We have so enjoyed having you on Shiraira.
Thank you and actually surprise.
We're going to have you comeback next week for part two.
Stay tuned and until next time,don't forget your spoon.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy And Charlamagne Tha God!
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.