Ten: Trekking Stubborn: 91

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
With luck checking stubborn through this season fatigue, I shall
patch together content of sorts. Miracles occur, if you care
to call this, call these spasmodic tricks of radiance miracles.
The Weight's begun again, the long wait for the Angel,
for that rare random descent, Sylvia Plath, Blackrook, and Rainy Weather.

(00:24):
This is going to be a quite personal episode, but
I am known for that. Over these past seven years,
I seriously considered making this one private, even locked it
Patreon and substack. But after heavily carrying that burden around
for far too long, ruminating as I am wont to do,
I reminded myself that some of my loveliest reviews mentioned

(00:45):
how much you guys like my being vulnerable and sharing
my journey. So here I am. Maybe I will eventually
lock it if I feel strange about it being in
the wild. Later I shall see. So this is intended
as the full catch up I have been promising. So
where have I been in a more symptomatic place than

(01:08):
I have ever been, and with new diagnoses, I have
to remind myself that using plain language about it does
not mean I'm thinking, nor that I have attention seeking
nor complaining. So I am sicker than I have ever been.
On this the tenth anniversary of my leaving work in

(01:28):
an ambulance. I wish I had the opposite news that
I was improving, that we discovered the best medicine for
these symptoms or those symptoms, that my wheelchair has stabilized
me to the point that I could return to part
time work is allowed by Social Security. The truth is
that in the past year I've lost weeks of the
time to pain and vertigo, unable to rise from my bed, sometimes,

(01:55):
unable to even concentrate on reading, which, as you know,
is my favorite. I'm working through the unwarranted shame of
this by telling myself that this is precisely what Social
Security disability is made for, that this is why I
don't work. That helps, but not all the time. As
I talked about in Episode twelve dancing driving a pizza Hut,

(02:18):
I was a ballet dancer for thirteen years, all of
my youth. Now sometimes I have no grace left to
even lie still, to sit. I hope I'm making sense.
I have been feeling guilty about not having done this episode,
about doing any episode, and I've been worrying about doing

(02:42):
this to add to all the stress, so I might
not be articulating myself completely clearly. Also, the language of
chronic pain, truly unceasing physical pain, is a language that
is customized to each person. It's a dark and private
tongue that is difficult to translate when you're awkwardly blinking

(03:06):
in the light and exchanging small totonicities. Not only nuance
is lost in translation when you can't move, because shifting
positions might take the eight that you're already at on
the pain scales of nine, and you fear walking to
the bathroom, which you've got to do, might take it

(03:29):
to that mythical ten supposedly mythical ten, but you don't
want to tell anyone because that sounds are ever wrought
and impossible. It really does feel like you're dying. I
feel lack. I hold my fingers up ten white pickets.
See the darkness is leaking from the cracks. I cannot

(03:53):
contain it. I cannot contain my life. I shall be
a heroine of the poor. I shall not be accused
by isolate buttons, holes in the heels of socks, the white,
mute faces of unanswered letters, coffin in a lettercase. I
shall not be accused. I shall not be accused. The

(04:15):
clock shall not find me wanting, nor these stars that
rivet in place Abyss after Abyss, Sylvie, applith free women.
And when you're trying to write poetry in this dead
graceful language to express this new life of a decade,
this new life of slowly needing help with things your

(04:36):
clients which needed from you, and you stumble across people
aping the symptoms of what ails you of aerl zamos
and pots for Internet likes so they could get Social Security,
for medical attention for some deep dark need they can't

(04:58):
quite articulate. They don't. And now watching someone with factitious disorder,
which was formerly known as muschaus and syndrome, pretend to
be sick, it can steal your words. The communities of
people that might support me online have been rendered uncomfortable
to unsafe by people suffering from fectitious disorder who are

(05:22):
in the autism part of TikTok are in the pots
subreddit just to garner attention and to get tips on
how to think more convincingly. I really wish I was
making this up, telling you the beginning of some horror
novel or a season of American horror story set in
a hospital. But I'm not, and so that means that

(05:44):
my world gets even smaller, so I can't commiserate or
make new friends for shared experiences. I've been on the
Internet since the early nineties, since AOL and coffee Serve,
and even before IRC and Usenet, but this is the
first time I've truly withdrawn from it because of all this.
It's not all bad. I mean not every day is

(06:05):
like this. I'm mobile and I'm reasonably self sufficient today
and my mind feels clear, no fog in the forecast.
And I just finished recording with Princess for Bipumpkin and
we had a great time talking about teen Mom for
two hours. So I have really good days. And in
April I was able to ride the train as they
told you the last episode, using my new power wheelchair

(06:28):
to Washington, d C. To see my friend when I
spuried at Arlington Cemetery, and to tour the National Cathedral
for the first time. And may I recommend DC Yella Cab.
Uber and Lift weren't ready for all this jelly but
DC Yella Cab, but they're easy to use. App had
my back the entire visit. It was super cool and
it gave me a lot of hope. And SUV slash

(06:50):
van hybrid with the third seat remove would pick me up.
I would drive up the ramp into the back basically
the end of the trunk, and get hooked up and
hooked in and we go. I admittedly got corsick the
first time, because I'm not you know, that one't cute,
but I'm not used to riding the way back. After that,
I was fine, and I really grew to love being

(07:13):
so independent again. It was really nice. Plus I was
able to take commena at the National Cathedral on Mary's Day,
the Peace Day, the Nunciation, the day on which Mary
learned and accepted her purpose, and now the Cathedral's cript,
as I told her, is one of my happy places.
As strange and bizarre as that sounds. I rolled around

(07:33):
those quiet, dark stones with Hosier's Dante album in my
ears and felt more peaceful than I have in a
great while. Now, listen a Hosier's interpretation of Dante's Journey
from Hell to Heaven. VI. Virtial's Side serves as a
relaxation pool. It takes you back to those glass and
stones and dedication. And I've finally been able as well
to see Ramero's Donna the Dead on the big screen

(07:55):
as well as The Shawsha Redemption. And I'll fight anyone
as the Santa goes who says the aren't two perfect
movies about the human condition. And it's always a pleasure
to go to the movies at the Charlottesville Alamo Draft
House because it's so accessible. If I choose to use
the wheelchair seat, I just reserve it and the seat
that's in place is removed for me, and the space

(08:15):
is ready for me to part and it's an excellent seat.
It's only three or four rows from the screen. It
depends on the size of the theater that is in.
If I choose to sit on the front row, that's
fine too, that's my option. I can use the safety
rail to go down the shallow steps, and the recliners
are very supportive and comfortable, and the staff don't mind
if my husband parks my wheelchair in the far corner

(08:36):
out of everybody's way. Either way, I'm fully included and
that's the whole point of accessibility. And Mom and Dad
have also moved in next door, you know, I've always
said I live up on a mountain with no neighbors.
Well that's no longer true. And we're building a safe
path so I can drive my chair from house to house.
It's so nice to be easily able to see each

(08:57):
other and to be able to easily assist each other
like this. And the dogs love living so close to
Grandma and Grandpa. I am also slowly but surely writing
a horror novel with my wonderful friend, horror author Bob
Ford full eye. Speaking of Doggie's Arlow just said something
sorry about that. Mister Arlow reminded me that it was

(09:18):
time for his medicine. You can tell time better than
I can. Anyway, as I was saying, I am also
toldly but shirley writing a horror novel with my wonderful
friend Bob Ford, a horror author. That's hard to say,
horror author, it's quite hard to say. With the soda

(09:38):
and accent. We're both really excited about it, but we're
negotiating my health in his current projects at the moment,
because he's quite busy in the most wonderful way. But
still still, we're over twenty thousand words into our first
draft and we're both in love with it. I cannot
wait until we can play with it in earnest and

(10:00):
until we can share it with you. He will be
my guest for my one hundredth episode, and he'll tell
you all about what he's been working on, and it's
really exciting. For now. I recommend reading some of his work,
The God Beneath My Garden if you're into short stories,
Burner if your taste runs to more intense horror, and
The Dead Pennies if your taste or more mainstream. I'll

(10:23):
link those books and his website and his YouTube channel
in the show notes and in this episode's a web
cent intry. I definitely recommend his YouTube channel where he
reads to you. All right, back to the not so
fun stuff. As far as symptoms, worstening, this past year
has been the most difficult. What was initially diagnosed as

(10:44):
colitis has been recently discovered to be structural IBS redundant colon,
which sounds funnier than it is. Basically, EDS has contributed
to my intestines outgrowing its container, so it's gangling and unwieldly,

(11:04):
kind of like its owner, and all the grotesque problems
with motility that might go along with that that you
can imagine have happened. And I will spare you details,
I promise. I'll just say that it started last summer
with food aversion and loss of appetite. I started becoming
nauseas its response to television commercials showing food. It was

(11:27):
that intense, of course, because I've had an eating disorder,
as I've shared with you, I had a deep and
intense self check what is this? Is this disordered eating
or it's likely head? Or is this immune and nature?
Is this physical? Is both? This is all the kind.
I also had to make certain that I didn't allow

(11:49):
these issues to feed into Please excuse the more big
pun these past problems. And yeah, so I am still
a year later on a bland and small diet, boost
type protein drink has sustained me. I've lost eighty to
ninety pounds this past year, depending on the day, because

(12:13):
my weight fluctuates because I'm chronically ill, and I'll talk
about that, I weigh at the most one hundred pounds
less than my highest weight. Weight is a very complicated
issue for the chronically ill, because weight gain can be
a symptom of our disorders. Plus an added side effect
for more than one of our medications pile on. So,

(12:37):
for example, I desperately took predozone diagnoses dosages the judicial system. Sorry,
I was talking about Danner Carvey's comedy routine the other day.
Dosages ten eleven, twelve years ago. In order to fight

(12:59):
the wall of it's that was making it clear that
I would have to stop working, probably start stop driving,
as well, begging ormatologists again and again to help me
stop dozing off as if I've been drugged storied. Weight
gain is no joke, and it's quite the blow to
the self esteem. There's squishy round cheeks and that double

(13:22):
and chin are it's not melts, and they strike vanity
into the heart of the most humble. I don't care
as her. You think you are in your looks. You
look in the mirror and you see that squishy football head,
you suddenly have feelings that's what you look. Then there's

(13:47):
lots of mobility due to symptoms, which only makes the
whole thing worse, but on weight. And then there's joint
swelling and fluid or tension due to symptoms and to
medication side effects. And then there's something called exercise intolerance day, Yes,

(14:09):
with some chronic illnesses and disabilities. Careful exercise is medicine.
Absolutely not for some, and I am one of them.
Unfortunately mix spots. My system doesn't know how to regulate
for movement and temperature. I'm like a really sensitive car.

(14:30):
You know, I'm like an expensive but stupid car to own.
So I'm like cute on the outside and a wreck
on the inside, really fancy, and it's going to take
a month to fix it, and we don't know if
we could fix it, so general working out could be

(14:51):
a disaster. I mean, gentle working out. How bad is
it this one time at band camp? Sorry all right,
I had to light in the move to prove I'm
not grandstanding or complaining. But it's really that bad because
it's one time I fainted at physical therapy while doing
supervised stretching against the wall. Supervised stretching against the wall.

(15:18):
I was unable to fully recover and I had to
go to the hospital for supervised stretching against the wall. Man,
it was so embarrassing. It's embarrassing to tell you this.
I went down on wall stretches being supervised by a professional.
So much for ballet. Ballet's run out, so I'll get

(15:43):
above to tell you the huge wall my body has
fought through in order to lose this huge amount of
weight so quickly this year is massive. I had to
make that fun wall so redundant. Colin, especially with the

(16:04):
added spiciness of the damaged collagen brought on by Errol's Damila,
has given it just some extra stretch. Sorry for that visual.
It's affecting other organs. It pushes on my bladder, even
on the bottom of my loans at times. And that
was a spooky sea teek scam result I did not

(16:25):
like it, would not recommend, would not do again. And
anytime anything like this happens, my man system tries to help.
You know, like money mouse, you're not going to the
same day. And here comes to the fever and the high
levels of pain, and I can't podcast and I can't read,

(16:47):
and round the round to go with the shame and
the guilt and the beating myself up. It causes worse
inflammation and so on, and I gotta get off this ride.
So I am grateful for the weight loss, because of
course it's less pressure on my joints and my body
as a whole, which will help improve the intensity of
my symptoms overall, and it's lovely being the size I

(17:10):
was in college. Again, I have to admit, but it
hasn't been fun doing it the hard way, and I
miss really enjoying food. I like food. That part is
getting a little better as I've become less afraid to
try to eat this food or that food, less afraid
of the aftermaths, and not to pit Too's fine, A
spot on it again, no details. I am determined to

(17:33):
keep my digestive system working, so I got to eat.
See that's a real danger for people with DS. It's
called gasteoporosis. It's where the stomach stops emptying properly and
it freezes. It stops it currently is. If I don't eat,
my symptom might close. My system just might close up shot,

(17:57):
and things could get more than dicey paralyzed. That scares
me just thinking about it. So every three hours or
some so, something goes down my gullet, along with lots
of water and gatorade where I like it or not,
so regimen alarms on my phone, lots of regimen So

(18:24):
one more thing that's happened healthwise in the past year
that sounds super serious. But it's actually been a blessing. Yes,
we're getting careful again because it has helped me put
my life in order and help me understand myself. Confession
start with the confession. And this is rough because I

(18:44):
rarely have ever said this allowed to anyone, or even
typed it. I have always felt like everyone else has
been given a rule book for life that I didn't receive.
That there was this unspoken understanding of how to just
do stuff that I have just not been pretty to.

(19:08):
Oh God, I said it, okay. I have just always
been a little out of step on an everyday basis.
At work, with friends, just in general, people would just
give each other side glances when I spoke or when
I asked questions, as if I should have known the

(19:31):
answer without asking. I would do as I was told
at work or school and get in trouble formally or informally.
I would verify that I did precisely as interrupted, and
then I'd get in trouble, so to speak, either officially
or socially, for asking. It's exhausting. I've just always felt

(19:59):
like I was in a play that I joined mid production,
off script, and I was expending every single bit of
my energy to keep up with all the other people,
and not to let anyone down on the crew or
the cast all the time. In other words, life kind
of felt like a stress dream all the time. I

(20:21):
can't believe I was saying this all the time, at
least when I was around other people. I never questioned
it because I'm introverted, highly sensitive, was an incredibly shy child,
as I've said in the podcast before, and I have
always seen and accepted myself as socially awkward. So I

(20:43):
just thought all of the above was par for the course, right.
You know, I do my best work in solitude, right,
and I'm just weird. I'm just eccentric, right, Not quite,
I'm autistic. There, that's done. I found this out at

(21:04):
age fifty two. Our culture loves to talk about curing
and preventing autism, but listen to me, it's really just
a different operating system. Most of y'all listening run on
Windows and Mac, and my brain runs on Linux. The
only trick is I didn't know, and I kept trying

(21:27):
to run Windows in Mac programs and utilities, and so
did other people tried to force some on me, and
no one wants to eradicate Linux. It's highly robust. You
just can't expect it to run mind sweeper. And if
that reference right there doesn't convince you I'm autistic, I
don't know what to tell you. There are negatives to

(21:51):
being autistic, just is there are negatives being left handed
or being far sighted. I'm hyper sensitive to repetitive sounds
and bright lights. I experience them as systematically painful, not
just as annoying. And if I'm sensorially overwhelmed or emotionally
a physically depleted, I need to reboot myself time in
a quiet, dimmer place where I control all the stimulus.

(22:15):
Otherwise I feel panicky. I manage this in public with
earplugs that allow me to dim noise but still participate
in life around me. The company loop has some great ones.
I'll put a link in the show notes. And noise
canceling headphones, tinted eyeglasses are great for our culture's assistance
upon overhead fluorescent lighting, which I can actually hear as

(22:40):
well as see. Trust me, I can hear them, I
can feel them in my skin. I also know that
I want and need certain comfort items with me in public.
My favorite pen, my commonplace notebook, this book that book,
my water bottle. I pack my purse very carefully when
I go out in the world, the same as you do,

(23:01):
just with much more attention to detail and probably thinking
more about preventing problems than maybe just needing a band
aid or safety pin. I used to do this in
middle school to avoid that awkward I don't know the
social rules feeling. I would read during liminal times on
the bus before class started, and I would bring two

(23:25):
or three books with me to school, sometimes just to
feel safe because I've read so quickly, and plus we
had a long country bus ride and the idea of
finishing my book and now what felt unsafe untethered. Never
mind that I had done almost all of these kids

(23:45):
since kindergarten. Even if I talked to them, I needed
the books in my hand as an option and a comfort,
an out, a reminder that I was okay and I
know what I've doing. So there I was, twelve year
old me carding two or three paperbacks around to every class.

(24:09):
And that's the thing about this diagnosis. It makes all
of that imagine my waving current flappy arms around to
encompass everything I've said, makes sense. It makes it make
sense that it freaked my parents out because I like
to be alone and work on projects in the summers
while everyone else was at the pool in each other's houses.

(24:29):
It makes it make sense that I didn't get the
fork in the road joke in the Muppet movie, as
well read and intelligent as I was, and by the way,
it explains why I spontaneously started reading before the age
of two. The phenomenon of hyperlexia isn't fully understood, but

(24:53):
it is seen in some autistic children. This showed itself
in my vocabulary as well, which was sometimes quite funny
because he would greatly outreach my maturity. For example, I
would ask for something to drink by saying, very dramatically, Mohammy,
I am so dihydraated, good Lord, I must have been

(25:18):
more than a handful. If you combine the extreme shyness
and sensitivity with the vocabulary book smarts of Charles Wallace Murray,
it also makes it make sense that the slightest hint
of rejection would privately break my heart. No matter the source,
she is deferring to reality, it is I. It is

(25:39):
I tasting the bitterness between my teeth, the incalculable malice
of the everyday Sylvia Plath, three women and I have
a name for that, rejection sensitivity dysphoria. And some people
with autism also experience it like I do, and I
have the tools to deal with it, to not fear

(25:59):
like lack of communication, to not mind read, to not
procrastinate because I might not finish the test perfectly, to
not be highly agreeable, to not be so self conscious
it hurts my skin. It also makes my info dumping go.
This podcast makes sense. It's a love language for me.

(26:21):
If I care about you. One way I show it
is here. I have a bunch of exciting facts and
research about this thing that I love, and I'm giving
it to you. Yes, Bob, this is me putting context
to my random Bougio texts. You're welcome. Nothing says I
love you like a core info dump. In my opinion,
I've been told by several different individuals that the two

(26:41):
television characters I must resemble are Ruper Giles from Bucket,
the Vampire Slayer mister Arcane information librarian himself and doctor
Spencer Read from Criminal Minds, who I believe is supposed
to be autistic, coded and well. And now it not
makes sense and I feel so much more comfortable being myself.
I have this new language with which you speak about myself.

(27:04):
I understand why I'm getting flustered over something I quote
unquote shouldn't be. It's that my system is getting overloaded
and I need a quiet moment. I feel much freer
to infuse joyfully every things that interest me. What you
call a rabbit hole, I call Tuesday afternoon. I have
a personal documentation system. I guess you'd call it a

(27:25):
personal wiki, using the software Notion set up as a
second brain, and I am constantly adding to it. I
live to live in it. I told you seven years
ago going into this podcast that just look HARRYT the Spy.
I want to learn everything and write it all down.
Now I feel much more joy and abandoned in doing so,
because I know that's not just ecentstory ecentreatdy did you

(27:50):
use your system eccentricity, but that my brain reads needs
and thrives upon doing so. It's food for my soul,
and so I shall even more why it don't And
I'm much less self conscious, as you can see making
fun of myself now that I know that I don't

(28:13):
know how unspoken social nice abuse work, that sometimes I
don't quite know how to people, and it's okay, but
that I know how to people a lot better than
I think I do. Now that I know what that
nagging stress dream feeling was, I am free just to

(28:36):
be my eccentric, awkward, weird self. I know that I'm
kind of polite and that I'm not running over anyone's
toes with my wheelchair or my behavior, and that's all
I can ask or expecting myself. So anniversary ten years ago,

(28:56):
on August twelfth, I got up, I made coffee, which
was a professionally comfortable outfit, and I headed to the
office with no idea that it would be the last time.
It was a rough morning. I was devastated upon awaking
to learn that Rob Williams, one of my heroes, had died.
I still haven't quite processed that fully, as tied in

(29:18):
together with my leaving work as it is. That sounds
selfish and self absorbed. I don't mean it that way,
but it truly burnt my heart, and I compartmentalized it
so I could go to work, and within hours I
was in the hospital. So I like to think he's
on sabbatical. The happiest most joyful sabbatical ever. I like

(29:41):
to picture his cavorting somewhere. Maybe that's what heaven is.
If anyone deserves to covort for eternity, it's Robin. So
I worked for a couple of hours and then I
begin to feel distant for myself. I had a cardiac event,

(30:02):
which is a broad term for something not good that
is not a heart attack. I think my heart rate
began to climb rapidly, and the pot symptoms started doing
their weird stuff in response that I dissociated. So that's
why I just describe it as distant, because my memory

(30:27):
of the rest of the day is as if I'm underwater.
I remember suddenly thinking I needed help, but I had
no idea why. There wasn't any particular pain or looziness.
It's just something was wrong. I knew I would need

(30:49):
my medications list, so I logged into my patient portal
and I printed it out. I calmly walked to the
facts in printer room and grabbed it, walked by my office,
logged out at the portal, and swimmingly pondered my next step.
My neighbors were the safety officer for the building and

(31:11):
one of our nurses. The safety officer was out, so
the nurse it was I was this detached, so I
must have been dissociating, clutching the med list. I went
to her doorway and I think I just stood there.
I remember her saying to someone that I looked like

(31:33):
I'd seen a ghost. The next moments are a blur.
More people enter her office. Someone made me sit down.
Someone made me eat baby aspirin. I'm cold. Then I'm
an ambulance. My blood pressure is stupidly high, and I'm
stupidly impressed with the number like I'm high. Someone makes

(31:56):
me eat nitro. Then I'm in a hospital room. I
don't remember the er at all. It all feels and
looks like it's underwater from the time I took my
paper off the printer, and I really don't remember anything else.
I know they read lots of tests. I don't remember
any of them. And I never returned to work in
any form. I can't work. You see how much trouble

(32:22):
I have just podcasting. It took all day to write
this script, and I had to stop for chest pains,
which pissed me off. And then I meant to record
this the day after the anniversary thirteenth, and I am
now recording it on the seventeenth, which pissed me off.

(32:45):
I happen have to remind myself this is why you're disabled.
To stop it or I'll rab it hole myself right
in the feeling worse than I already do. I have
the mind of the Carla that you used to create
and research or write for twelve solid hours, and it's
in a damaged body. Hell, I haven't even been knitting

(33:05):
this summer, that's how sick I've been. So I need
to cut myself some major slack. I'm learning. I'm learning
how to do this over and over and over. So
it's my anniversary. I feel really weird about it. I

(33:26):
keep saying weird, but this is such a fraught episode
that I'm cutting myself a lot of slack on vocabulary
as well. I feel weird, Okay, I really am the
loss of words. Oh god, it's weird. I was off
kilter and out of sorts all day. I'm the twelfth
extra sensitive to stimuli. I really wanted to right and

(33:48):
record this episode on that day, but I had to
give myself permission not to do that again, knowing I'm
autistic helps so much. Before I would have been beating
myself up with shame, and I might have forced myself
to do it. Now I extend grace and it makes
perfect sense to me. Not being able to quite name

(34:09):
this feeling I'm sitting with is part of autism for me.
For a long while, it was just my saying I
felt quote out of sorts and not knowing exactly what
that meant, except that I felt really unsettled in my
body and emotionally upset. At the same time. Therapists heal
thyself right. Everything really has come full circle. Reminding myself

(34:32):
about tools I used at work and theories I learned
about in school is helping me support myself to be
as healthy as possible. Such as the emotions will, which
was originally developed for out Gloria Wilcox, a marriage and
family therapist. The idea is that there's only a few
primary emotions at the heart of everything, to which all

(34:53):
other emotions are related, and their anger, sadness, happiness, surprise,
and disgust and that and that everything else we feel
is the secondary or tertiary emotion. And if we can
just get down to and name the primary emotion at
what we're feeling space, we could better get in touch
with what's going on with us in the moment. It's

(35:14):
also a marvelous tool to use to expand your own
emotional vocabulary. Thanks to my psychology and counseling degrees, I
do have a white emotional vocabulary. But he tends to
go right out of my mind sometimes when I'm under
distress and all I find myself with is out of sorts, upset,
and the real kicker. I don't know. No one's absolving

(35:37):
anything with any of those, especially not I don't know.
This wheel is the image for this episode, and I'll
include it in the website entry for the show Gonna
deep die for a minute because this is what I
went to school for and psychology is a special interest
of mine, and for latistic this is my podcast. Hang on,

(35:59):
it'll be and hopefully interesting. Bear with me. You can
work with the wheel by going in either direction, going
outward to get more specific or going inwards to drill
down to what primary emotion is driving your feelings. For example,
I was talking about rejection sensitivity dysphoria. Say I'm worried
about a terse response I received terse as perceived by

(36:20):
me that is not actually terse It made me feel
the sense of emptiness again, this feeling of being quote
out of sorts. That feeling is actually on the wheel
as a tertiary feeling go in that's labeled as depression. True,
those feelings are there and I need to sit with them.
The primary emotion, of course, would be sadness, so I

(36:43):
can claim the feeling and process it and comfort myself
properly instead of treating it like boredom or listlessness or
otherwise knowing my feelings in another case of such, I
start with sadness, but I want to know exactly what's
being triggered, what's going on with is perceived and not
at all real rejection. Above sadness, I can see the

(37:04):
word abandoned. It's a bit strong of a word for
this feeling and situation. I don't feel abandoned, but it's
in the ballpark, so I'm intrigued and it won't work
to follow it, and when I do, it leads to ignored,
which is so much more helpful for sorting out my
thoughts and feelings in my mind maybe in my journal,

(37:25):
than sad because I know I'm not being ignored my
brain Wiring is lying to me again. See now I
have tools. I never thought ten years ago when I
was managing care that I would have my own social worker,
now that I would have Medicaid, Medicare and Social Security.
Funny how things work out. I miss my own little,

(37:47):
cozy office, and I miss very much helping people for
a living and using my master's degree. But I feel
like I'm more myself now than I ever have been
in my entire life. I don't completely understand that one,
but it's true. I've grown into myself somehow. I've included

(38:09):
episode twelve at the end of this episode since it's
so relevant. It was my first looking back at the
things I miss and the things that had changed before
I go and that episode starts. I want to share
one vivid memory of not understanding figures of speech. I
went to this period in elementary school of not asking

(38:31):
when I didn't understand something I read. Because I was
so advanced, I figured if I didn't get it, I
was supposed to, so let's just keep it moving. I
over anticipated the embarrassment I might feel where I have
to ask autistic thinking because I was a kid and
therefore not supposed to know stuff. You know, I didn't

(38:51):
give myself grace for being a kid. I was reading
a Nancy Drew novel. This is so vivid. I was
reading a Nancy Drew novel and Nancy had a train.
Nancy had a train on her formal or semi formal dress.

(39:12):
You probably see where this is going. I could still
hold the ridiculous and a very funny image in my
mind that I had. Then I stopped reading. I looked
up from the book I was lying on the carpet
in my room. I thought to myself, why would she
want the image of a train printed down the side
of her dress? That sounds hideous, and went back to

(39:35):
reading the novel. I could literally hear my little kid
troubled voice in my head, sounding so fussy and judgy,
like a little real housewife. I remember it like a
happened yesterday. Yes, I used the word hideous. I was
probably in second grade or so, if not first grade.

(39:57):
I was a tiny adult and now I'm an adult
autism baby. And that's why you listen to me, folks.
My bizarre brain is the gifts that keeps on giving.
It's what I do. I know things. I look at
things from a weird angle and I love sharing them.
Stay tuned for a rerun of episode twelve, Dance Driving
Dancing at Pizza Hut my first exploration of how my

(40:20):
life changed and what I had had to give up
and know that I've missed talking to you A very
great deal. I recorded with Princess for her show by
Pumpkin before recording this episode, we talked for two hours
about the explosive beginning of Teen Mom, Young and Pregnant,
and it was a whole lot of fun. As always,

(40:40):
I'm always honored to receive that invite. So come listen
to a woman in her fifties with no children talking
about young women having babies, because that sounds like a plan.
That's what reality TV dreams are made of. I got
find my cupcakes where I can, and so I walk
away on wheels instead of legs. They serve as well.

(41:03):
The body is resourceful. The body of a starfish can
grow back its arms and newts are prodigal and legs
and may I be as prodigal in what lacks me.
Sylvia Plaith three women. I am not what has happened
to me. I am what I choose to become. Carl

(41:26):
Jung Hi, this is Carla, and welcome to episode twelve.
If there might be cupcakes, driving, dancing, and pizza Hut.
Today's episode is special to me because I'm letting you
into my world a lot more deeply than I have
this far. I'm going to share with you my journey
from becoming an average workaday person, a therapist, a mental

(41:48):
health case manager, a person just like you who could
choose to go somewhere and hop in the car, for
whom a headache was a bad day, into the me
I'm still becoming semi housebound, chronically ill, always in physical pain,
disabled woman. The title comes from conversations I've had throughout
the last couple of years with family and my best

(42:10):
friend Joshua. It's the shortlist of what I miss most
as a gluten free, loose jointed person with chronic pain, fatigue,
and brain fog, driving, dancing and pizza hut. A huge
part of this journey, as you might suspect, is involved
books and reading. So before we begin unpacking all of this,

(42:31):
because yes, I've never done this before, today, let me
thank my sponsor Audible and suggest your choice for a
free book with your free trial. It's one I'm going
to quote today, Yes Please, by Amy Poehler narrated by Amy.
It's her own unpacking of her journey and listening to
her read to me, help me laugh through my morning
and to make some difficult, important decisions. You can snag

(42:55):
it as your free book by signing up for a
free trial at Audible at audibletrial dot org. Calm slash
might be cupcakes and thank you. Most of this episode
will be my sharing my friend's only posts on Facebook.
I e. Things I've only shared with my friends before.
Now I'm starting before I found out anything was wrong

(43:17):
and was still planning upon becoming pregnant, seeing a fertility
doctor and undergoing tests. See that's how I found out
something was seriously wrong with my immune system. So you
will get to see that I've not always remembered that
there might be cupcakes if I just keep trying and
moving and persevering. There were also times when I didn't
even care about the damn cupcakes. For all I ever

(43:40):
wanted to be was a mom. I famously told my
parents at the breakfast table around the age of two
that I knew I wanted children. They encouraged this random,
cute thought and kept eating pause, but I don't think
I want to get married. Toddler me finished thoughtfully, and
Dad nearly choked on his wall. As I've said before,

(44:03):
parenting me must have been interesting. The reason I mentioned
pregnancy in parenthood is because it all ties into my
becoming sicker and sicker and finally disabled and not a parent.
Directly ties into I first found out, as you will see,
that there was something seriously wrong with my immune system.

(44:24):
Thanks to my fertility doctor May eighth, twenty eleven. Hopefully
next Mother's Day I will be a mom. Until then,
I'm a dog mama, the proud mom of Arlow the
Chucklehead and Ellie the Demanding October twenty second, twenty eleven.
Thanks to my doctor's visit on Thursday, my ability to

(44:47):
succeed at IVF went from fair to good to excellent.
We were able, thanks to Mom, to connect my general
health issues as well as specific fertility related issues, to
my brother's health problems. Maybe this is the only way
it could have gone. You didn't get the quest you wanted,
You got the one you could do. That was the
hard part, excepting that you didn't get to choose which

(45:09):
way you went. Lev Grossman, the magician king. As I
believe I've mentioned before, my brother Eric had Adas' disease,
which is also non immune disorder, and he developed it
in the womb, which is highly unusual. As you can
see from what I wrote, I only looked at the
good side. Now we have a reason, I'm infertile. Insurance

(45:31):
will pay for IVF. Here we go. Now we know
what's wrong. I hate the unknown, you know, I NFJ
and not the bad side, namely that the the face
me philippine tubes looked like they'd been attacked by a
cheese grater, literally, and that cheese grater was my body,
and that this meant that I was likely very, very sick.

(45:57):
I dealt with the fatigue and the aches and pains,
and the diagnosis of room toward arthritis, and the wooziness
that started to show up, and I focused on this
quest of fertility and postgraduate counseling school work and my
job as an intensive in home counselor with youth in
their families, which was physically and emotionally grueling, in which

(46:19):
I could conveniently blame for my increasing symptoms. So, in
this period between twenty eleven and twenty thirteen, I was
diagnosed incorrectly. It turned out with rheumatward arthritis, and I
took a whole lot of steroid injections and oral steroids
to try to keep going, especially with regards to work.

(46:39):
That's one very important lesson being chronically ill has taught me.
When going and trying and every effort has not worked,
perhaps perhaps your next step is to be still. I
finally got an office job, and I was spending less
time on the road some but much much less than
The gut pain started and after ping ponging from the

(47:02):
emergency room to my doctor, to myconocologist to a specialist,
I had to face facts there would be no baby
and this was not really retorted arthritis because it was
not responding to ra medications. I was much sicker than
I thought or admitted, and I was infertile. December two,

(47:24):
twenty thirteen, I have fibroids both inside and outside my uterus.
The yard doctor referred me to a specialist who support
explore surgery options. I am in a lot of pain.
Please keep praying for me. I love you. But here's
why I always say there might be cupcakes. This next

(47:45):
event happened after grueling twelve hours or so in the
emergency room, probably six of those in pain waiting to
be seen. December sixth, twenty thirteen. I have to brag
on my dad, Larry and I. I've told me yesterday
from the er at four am, waiting for us. Leaning
against the side of the house was a lovely Christmas

(48:07):
tree wrapped up and waiting to be installed in its
new home. It was something out of a movie. Carlos
Pettigrew is the best dad. December fifteenth, twenty thirteen. If
it weren't for my ability to lose myself in book
after book, this pain would have unbalanced me by now

(48:27):
that's more unbalanced than I already am. Peanut Gallery going
back to bed, hiding under the covers with my book.
And so I read and aggrieved, and I worked when
I was able, and I tried to do everything until
I admitted I could do nothing and surrender to the
season of advent, which is one of rest in waiting.

(48:50):
December twenty seventh, twenty thirteen. My body has never been
more damaged, more ill, My mind and spirit have never
been more whole, more peace. Let my intestines and my
immune system rage, my soul is at peace for the
first time. I fully know who I am, and I
love her. I am she who flowers from her wounds,

(49:14):
Countess Marlborough Salem. And then my digestive tract wanted more
intention This was a period when Crone's disease was on
the table because well, let's put this way, nothing in
my torso was playing ball. That's just a nice way
to put it. So those tests began January fifteenth, twenty fourteen.

(49:36):
A clear liquid diet. Sounds like fun, said no one ever.
And then the partial hysterect me in April. I've been
told that that's not how doctors refer to it, but
that's how the surgeon referred to it. And that was
the result. Commenced the hormones in the midst of the
still unmanaged fatigue, losing its free floating, constant body pain,

(49:58):
digestion issues, now strange bouts of forgetfulness and confusion. Are
you not entertained? May nineteenth, twenty fourteen. Pro tip if
you're ever offered the opportunity to experience accelerated early menopause,
just say no. And then the judging started. June ninth,

(50:21):
twenty fourteen. I did not realize that emotional pain is quantifiable, measurable,
and graded on a worthiness scale. Good to know, continue
to share your heart with people, even if it's been broken,
and ye polar yes please. And then there was the
carpal tunnel in tennis elbow, both in my dominant arm

(50:45):
entrenched boo we live here now carporal tunnel and in
tennis elbow. I honestly think the earl's down list was like, bitch,
do I have to dislocate your hip to get your attention?
You know? Diva disorder. July twenty eighth, twenty fourteen. Receiving
that injection into my wrist today might be the most
frightening thing I have ever done. I just might be

(51:07):
a badass. And then it happened. I had a cardiac
episode at work, That's what I call it. It was
EDS and probably early POTS, which is an associated postural
cardiac disorder, and it's often associated with EDS that I
now also have. Yeay, but I was still misdiagnosed at

(51:29):
the time, so we got the condition right, which is costochondritis,
but not the reason. I remember sitting at my desk
and starting to feel really strange, disassociated for myself, almost
that feeling increases. All the normal symptoms increased, accompanied by
racing heartbeat and chest pain. Thinking took real effort, like

(51:51):
I had to individually push each word out, and I
remember thinking, Okay, my office is next door to the
safety office, sir and a nurse. Those are both sound
options for help. I need to get my list of
medications and then I will go to whichever one of
them is available. And that's what I did, just completely

(52:13):
in a fog. I logged into my patient portal, I
printed my med's list, and I went to Tracy, the
nurse next door. By then, I felt so confused and
distant from everything around me that I just stood in
her doorway and handed her to the men's list. Apparently
I looked as if I'd seen a ghost, because she
went from hey to nine one one with nothing in between.

(52:34):
I remember chewing baby aspirin. I remember coworkers telling me
to breathe slowly, and I remember being in the ambulance
and my top blood pressure being almost two hundred. I
think it was one ninety. I never saw my cute
little office that I was so proud of again. Gosto
kendritis is basically what I described in this next Facebook entry.

(52:56):
Every place in one of your ribs meets a part
of your body is actually a step joint and therefore
is a possible place of inflammation. Well, with earl stawnlets,
my collagen is defective and collagen is crucial with the joints. Yes, okay,
with earl stampleins, my collagen is defective and collagen is

(53:19):
crucial at the joints. So my joints are loose and
don't work right, and you get the picture. It really
does feel like a heart attack, even without the racing
heartbeat and brain fog. And yes, it still happens regularly.
I have a pain cream specifically made for it to
apply to my chest and sternum, made from really powerful

(53:40):
drugs that my insurance would not pay for me to
put in my mouth, and that would stupefied me if
I did. But luckily I don't wish to be stupefied.
I just don't want to feel like I'm having a
heart attack. Yay compound pan cream. August fifteenth, twenty fourteen, Wednesday,
I was admitted to the hospital. I am now home

(54:01):
wearing a heart monitor. I had to be given niro
and the ambulance. I think my top blood pressure number
was one ninety. I don't remember much. I have a
severe kidney infection, an equally raging bladder infection, and an accelerated,
irregular heart beat. The doctor hospital doctor says, the RA
is inflaming the joints of my stm and rib, squeezing

(54:23):
my heart cavity and making my heart beat too fast
and unevenly. Resting, scared and in pain, but resting. August twentieth,
twenty fourteen. I don't know what's going to happen today
when I see the doctor, but whatever it is, I
have two choices. I can either fear it or embrace it.
I choose the latter. Three forty five today. Send me prayers, mojo,

(54:46):
and love. If you can serve your life rather than
plant your feet, you will be happier. Amian Polar Yes. Please.
One thing that I learned really quickly is that I
had better invent the new social life for myself, because
chronic illness is not only lonely, it's isolating. August twenty ninth,

(55:08):
twenty fourteen. The only people I have seen in person
for sixteen days are family members and medical personnel. That's
more than a little weird. But then again, so am
I looking forward to being sprung from medical leaf. And
I never know what it's okay to talk about my
daily life and when that's complaining or too much information.

(55:31):
Seeing your daily life is probably working kids in traffic,
all valid stress, normalized stress. My daily life is medicine
and insurance squabbles and having difficulty with washing or brushing
my hair. Yeah, on a really bad day, that's my
work in traffic. But it doesn't translate that way to
other people, not to everybody, And I learned that lesson

(55:52):
really quickly. September fourth, twenty fourteen. I worry that people
think I'm making a lot of painful and stiff joints
that they hear arthritis and don't understand that it's attacking
my body, my whole body. I'm trying to balance reaching
out to my loved ones without alienating y'all. But the
truth is I cannot get myself out of the recliner

(56:14):
or lift a jug of milk right now. And this
flare up started with an averted coronary event thanks to
my quick thinking co workers. I hope I can say
things like this, But that sounded like I'm feeling sorry
for myself, and I hope you know that you can
ask me questions or say something if you think I
might beginning to press yourself absorbed, or you wonder what's
going on with me. Honesty is a huge part of love.

(56:36):
I love you if you're reading this. I don't want
to be too much trouble, but I don't want to
avoid being too much trouble by hiding my feelings of
the true extent of my illness. I hope you understand,
and if you don't, that's okay too. Other people are
not medicine Amy polar Yes please October twenty second, twenty fourteen. Ugh.

(57:00):
When weeken to weaning off plaquanel, spoon's level very very low, woozy,
stupid from very high inflammation. This is a hold on
of nope. Plaqueanel was one of the things keeping me upright,
one of the only things. But your doctor said no
more so detox it is. That was some freaky detos

(57:21):
me useless in the bed and miserable with my kindle.
My kindle is a life saver as far as assistive
devices go. It really is an assisted device to me.
I can only support a physical book without distress and
pain on a good day with my hands and not
for long. Plus sometimes I suffer from blurry vision, and
with my kindle, I give to crank up the font size,

(57:41):
change the color and the contrast, whatever my poor eyes need.
November thirteenth, twenty fourteen. I missed my independence and my
co workers. It is surreal that I'm not driven a
car since August. Sorry. Not being clear to return to
work has me feel in a little charley all the night.

(58:02):
I kind of knew, just this gut certainty that I
was disabled no return to work for me, but it
hadn't been decided by the powers of be yet. This
was definitely an advent season of sitting with uncertainty that
had been extremely difficult and now appreciated lesson for me
to learn. We I Nfj's fear of the You know,

(58:23):
when it comes to stuff like that, I couldn't just
be in the moment and take care of myself, not
knowing if I was going back to work or not.
That was a lesson that I repeated every single day
until I got it, and it took many, many, many
many days. Getting found almost always means being lost for

(58:46):
a while and Lamont. Thank God for my DOCS and
Ellie and the worst moments of physical or emotional pain,
Sometimes all I had left to do was lie there
and feel her comforting presence next to me, just that
pressure in the bed next to me, encouraging me towards

(59:07):
the next minute. December fifth, twenty fourteen. An ode to
my stubborn nurse, Maide shadow to that tune of that
Christmas song that you know, it's beginning to look a
lot like a DOCS and everywhere I go, she's the

(59:29):
best nurse that I've got, whether I like it or not.
In my own sweet home, it's beginning to look a
lot like the DOCS. And everywhere I go, deliberately singing
off key, following me, you see, monitoring me in my
own sweet home. That was dreadful. December twelfth, twenty fourteen.

(59:59):
Okay burcked an update. No structural or nerve damage in
my arm sooners surgery needed, doctor says his finding support
point towards the primary or added diagnosis if ibermalgia. Fourth
round of antibiotics since August started. Don't like you know
your pain is officially intractable when your PCP offers you
a new oxy prescription without your having to ask. Next

(01:00:22):
room metologist appointment is next Thursday. Until then, I just
need to rest, do my physical therapy exercises and enjoy
the Christmas lights and keep up the hope. Love you guys.
That's not just the oxy drugs talking. That's right. Carpal
tunnel and tennis elbow were still a problem. Yes, it
had been a year and a half. December nineteenth, twenty fourteen.

(01:00:51):
Part of my life just ended. I am no longer
a working mental health professional due to my prognosis. My
employer held my position for four months after I left
my building in an ambulance, and I will always be
grateful for that. I knew this would happen. Either I
would act or they would. It isn't safe or ethical

(01:01:12):
for someone with my impairments to take management of someone
else's mental health needs. But knowing something so painful will happen,
and having it happened or two different things. I will
miss my coworkers so so much. Please no, I love you.
I don't want to leave. And I was so proud

(01:01:33):
of my little office. Thank you, Lee, Erica and Kara.
I have never been more proud to be in my
burve a team that that was the best year of
my work life. It really was. You all make certain
the next employee in Office one thirty one a landover
and as what cheerful goofy shoes they have to fill.

(01:01:55):
Please say goodbye team meaning and to the front desk
and counting offices for me, and don't be strangers. Please.
I send you the willingness to sit with any pain
and watch it melt and change shape as you soften.
Sark December thirty one, twenty fourteen. Twenty fourteen was the

(01:02:23):
most difficult year of my adult life. I welcome twenty fifteen,
but I wouldn't trade this year for anything. Thank you
all for supporting me through this year of illness and change.
I look forward to continuing to share the journey with you.
Happy new year. Perhaps this is the moment for which

(01:02:44):
you have been created. The Book of Esther, Chapter four, verse,
fourteen January third, twenty fifteen. Fibro equals clumsy disease. Earl
Stanwos equals clumsy disease. Oh I am klutz squared disordered
balance post hypermeable joints plus rainy day. I am going

(01:03:06):
to take myself or someone else out like the dog
in a fish called Wanda. If I don't just sit
really still today, can someone make me know bubble wraps
Nuggie please. January twenty fourth, twenty fifteen. I just saw
a snippet of Cake, Jennifer Anison's new movie about chronic pain.

(01:03:26):
Her character walked through a pharmacy and she walked just
like I do on a bad day. Just seeing my
pain depicted so accurately in her careful, but disjointed gate
brought tears to my eyes. I love Aniston so much
for pursuing this project. Please go see it if you're able.
I cannot express how much this movie means to me.

(01:03:49):
Just seeing myself depicted on screen, Seeing how carefully Jennifer
Anison researched chronic intractable pain moved me so much and
gave me so much hope. There's this scene at the
beginning of the movie that encapulates everything I'm talking about.
Her character arrives home in a cab and she hesitates
before getting out with this pained face. But it's the

(01:04:11):
nuance there that's everything to me. And this long hesitation
she's gearing herself up to move because she knows it's
going to hurt so badly, but she's also gearing herself
up for the possible shame. What if this damn cab
driver asked me if I need help? What if I
get stuck or fall and he doesn't help me? What
if I embarrass myself by crying out in pain? Now,

(01:04:32):
I imagine having to deal with all that internally every
time you get out of your uber. The movie inspired
me so much that I created a knitting project for myself,
Project cake Sweater. See, I hadn't been able to knit
since I left work in the ambulance and she wears.
Her character wears two comfort cardigans in the film. The

(01:04:55):
first is when she's refusing to take care of herself,
and it is as funky and nasty as you think.
She sleeps in it, she refuses take it off period.
It's funky and it is a badge of anger. It's
a barrier between her and the world. But the second,

(01:05:16):
when she's learning that well there might be cupcakes still,
she wears that is not armor against the world, but
strictly for comfort. I'll post the project, which I documented
on a penetrant board, in more detail with photos of
the completed sweater on the website. The sweater is the
very first thing I was able to knit after my

(01:05:37):
body completely shut down on me in August of twenty fourteen.
The fatigue and the extreme hand pain combined wouldn't allow it.
So it's not just a comfort, it's a triumph. February eleventh,
twenty fifteen. Important life choice has been made. I may
at some point require assistive devices for long sojourns a wheelchair.

(01:06:01):
If I do, I am going to attack that thing
with a glue gun and steampunk it out there. I
feel better now that's decided. March fourth, twenty fifteen. Hide
your kids, hide your wives. I'm out in public today.
Book blood, draw bookstore them. Physiatrist March eighteenth, twenty fifteen.

(01:06:24):
I think medical specialists forget that patients are not asking
for audience with the king or queen. I pay you,
you deliver service and treatment. See how that works dramatically
goes back to bed. Seriously, you wouldn't believe how often
this happens. A specialist will actually question a referral, Now,
why did you think you needed to see me? Or

(01:06:46):
I don't think we need to make this appointment, or
they will shuttle you off to a physician's assistant without
telling you. I don't remember which lovely professional this was,
and I'm kind of glad I don't lost to the
sense of time gone no arrogant one. March twenty third,

(01:07:06):
twenty fifteen. Synovial ultrasound finally scheduled April twenty seventh. The
UVA Yay autocorneck correct initially turned that into synovial unleashing,
which is my new hardcore dubstep bending. April tenth, twenty fifteen.
Head you see the pain doctor this morning, new doctor,

(01:07:27):
So I'm nervous she'll dismiss my knees into concerns. I
need this help Singer, Thoughts and prayers, April tenth, twenty fifteen.
Later that day, two blessings today the best doctor's appointment
I have ever had. Two hours with the doctor, two
new anti inflammatory medications and accustom pain anti inflammatory cream

(01:07:48):
being created at a little local pharmacies lab. Follow up in
one month after the synovial ultrasound and full med dosage
it's been achieved. Also DHA levels, white blood cells and
indercin system checked awaiting those such results. So yes, Doctor
Andy Stuspin is an amazing, wonderful and jaded specialist better
than I can hope for. Also, this wonderful gift arrived

(01:08:10):
from my sweet friend Karen, more shiny tools to work
on art journaling and creating my woman merit badges. I'm
certain I earned one today and she'll be creating it
with my new pens. I feel loved, validated, and very
very helpful. Hi Karen, thank you, love you. As for
those woman badges, they'll probably come up in a later episode,

(01:08:30):
but basically to encourage myself as I went along, I
started making grown up girl scout badges in my art
journal for achievements I had to make that my average
friend didn't have to make, like making that Sonowhal ultra
sound appointment, fighting my way to it, things like that.

(01:08:55):
I'll have to scan them in so I can share
them with you. Second twenty fifteen. Everybody here either as
the creeping crud or is recovering from it, and so
they're all avoiding me rightfully so. But my immune sists
because my immune system will take that creeping crud and
like magic, produce bronchitis and or pneumonia. Good times. I

(01:09:19):
appreciate the protection, but I have no playmates. I need
one of those big hamster balls for humans, the inflatable ones,
so I can safely go amongst the German family friends
in public and also not hurt my hypermobile joints. I
smell a Kickstarter campaign. Screw a wheelchair, I want a
hamster ball. This next entry was triggered by an article online.

(01:09:46):
A woman with an individual invisible excuse me disability, which
is what chronic pain is in all its forms, had
parked in her rightful handicapped parking spot and return to
find this note on her windshield. Being fat and ugly,
he doesn't count as disabled. Park elsewhere. May six, twenty fifteen.

(01:10:06):
I am looking into getting a disabled decal for our car,
just in case I need it. The effects of fibermilesia
and eds are unpredictable. I might have the sperons to
walk into a store or restaurant with only a slight
limp for my damaged knee, so I might just look
like a plus sized chick, not sick, just average. You
would leave a nasty note and leave feeling justified and

(01:10:28):
satisfied and defending the social order, not seeing me return
from the outing barely able to walk either limp with
fatigue or pain or both. I've seen reports of these
notes about once a week lately, lots of them. When
I get my disabled parking permit, I'm also going to
get a chronic pain or Chronic illness awareness decal or

(01:10:49):
three for the car as well. I have come too
far in this grief process to be slapped backwards by
a stranger playing social justice warrior. I know I need
to because I gagged when I read this. But there's
good out there. Last night, at the restaurant Shoemaker's after dinner,
a waiter who was not even ours saw me limping

(01:11:11):
as we were leaving and came out of the restaurant
to flag us down and showed us how to bypass
the upstairs and the hotel guests only doors, but using
the hidden elevator within the restaurant. He was a true gentleman.
July tenth, twenty fifteen, my new folding in Case of
Emergencies Cane has arrived. She is so fierce I think

(01:11:33):
she deserves the name. Any suggestions interesting to mark how
things changed two years later. I have to use this
cane every time I got in public. She is fierce.
She's black, and covered in blue and pink roses. Her
name now is Tiffany because the blue roses are decidedly
Tiffany blue. In this time period of this summer, working

(01:11:54):
on the website for the dalup podcast, The dollop dot Net,
I met Greg Barrett, who's comedy inspired this podcast title,
and he met up with a doll up on turn
in Australia, was struck with sudden, excruciating pain and just
like that's thirty at cancer, he aggressively fought it and
beat it. I am always full of ideas, so I

(01:12:16):
messaged him one day and told him, look, I love
doing my stuff for people. I want to celebrate your
beating cancer. I want to celebrate my being able to
knit again. And you're a fashionista. I want to nitch
you a fabulous scart. Yes. Yes, where's the prosounding answer.
Anytime you see a video or photo of Greg wearing

(01:12:36):
a loosely knit black silk scarf that seems to have
other colors in it, that's the scarf I made him.
The yarn was spun from recycled Sorry, skilk, I can't
talk today. My apologies. The yarn was spun from recycled sorry, silk.
It's the other colors. I'm not editing this episode. I

(01:12:56):
think this episode needs to be raw given the the
subject matter. See New Beginnings for even the yarn Yard
had New Beginnings. I did, Greg did. It's a really
cool project. June twenty ninth, twenty fifteen. The dogs alert
the high fibrow and eds symptom levels, but the pitbull

(01:13:17):
is really socially awkward, which translates to concerns staring. I
cannot overemphasize the intensity and duration. Me I'll be okay, Arlow,
stare me it's okay. Arlow moves closer to stare Arlow,
You're a good boy. Stare. I'll add the staring picture

(01:13:38):
I took to the website. The scenario has been repeated
over and over. I traveled twenty third, twenty fifteen, sick, tired,
but still here, still pretty and wearing a hat I
made myself a couple of years ago, Boullia Universe. Is
that enough empowerment for one morning? Can I not? Now?

(01:14:02):
November three, twenty fifteen, Life with DS. I was dozing
off over my book last night. Cue the cartoon lallaby
me me me me me Me, Me Me me me
and so relaxed my joints as you do. For once
I was holding my kindle instead of propping it on
my assistive reading pillow. Lallaby becomes more ominous and also wacky.

(01:14:28):
My exhausted wrist hyper extended, and I slapped myself across
the face with my kindle. Good full dame slash broad
James Cagney slap, and we end with a wah wah
mistake trombone. This post comes with a post from Hopekeepers

(01:14:49):
for the chronically Ill, entitled when you are feeling too
fat to be photographed. I was preparing to meet up
with Greg at his gig and Raleigh and bestow him
with his scarf December seven teenth, twenty fifteen. Timely, I
am meaning Greg Saturday night, and inflammation and topical steroids
have given me a puffy face in general blurting and

(01:15:09):
weight game. But then I think he's your friend because
of your words, mind and sense of humor and your
kindness and none of that is eclipped by eds and fibropudge.
Take that double chin. We're going to Raleigh and you
will stay in the pictures. Jiggle bells, jigglebells, jiggle all
the way January seventh, twenty sixteen. Okay, I'm gonna balance

(01:15:32):
being big for the sake of not disturbing anyone with
needing to share my feelings. As far as fibro and
DS go, the pain and fatigue are the easy part. Comparatively,
both are autoimmune, so my body attacks itself and does
not handle germs well. Plus eds that thisase the disease
of the collagen, which is in all twelve body systems,

(01:15:52):
which means if my body were a car, it would
be in nineteen seventy two Vega so bat immune system
times two plus damage college and egos problems with rust
and corrosion on my paint chop. January twenty second, twenty sixteen.
Just injured myself in the shower. The shower didn't fall,

(01:16:14):
just eds and fiber of pain apparently washing my hairs
above my current skill level. My lower back went haywire
and the systemic disorders rang all the body alarms and response.
Had to take oxy and abandoned writing plans, which makes
me cranky. Let's see dignity of it all. It's not
like I fell in the ice. I washed my hair,

(01:16:36):
so I will indulge in a rare, complaining, angry meme,
you tell him, Sheriff Rick. The accompanying picture is a
picture of Rick from The Walking Dead pointing his gun,
and it says, tell me it doesn't hurt that bad.
One more time, I'll post it. January twenty seventh, twenty

(01:16:58):
sixteen validated. Someone in the medical community heard me calling
to the hills that my body weight does not match
my intake. My internal engine is broken. Something is wrong
with my indecrine system, adrenals, cortisol, metallobolism, thiroid damaged. Something
my startle ref reflect and panic responses through the roof.
I haven't consumed soda in over two and a half years.

(01:17:21):
I don't remember the last time I ate fast food.
I drink a boat load of water, and my brother
developed Addison's disease in the womb, which is quite quite rare.
So not only is their genetic component but an intense
and unusual one. The doc heard me, She really heard me.
She respected all my research, she heard my historical data,
and she believed my food intake self report. She has

(01:17:43):
referred me to an endochronologist to get all possibilities checked out.
I can't wait my top suspect hashimotos. It's not a
thyroid disorder, but rather like your immune system blasting and
killing your thyroid like an alien in Space Invaders. Maybe
multiple on some the unseub turned out to be Potts.

(01:18:07):
February eighth, twenty sixteen. I would much rather endure pain
at the higher level of the pain scale for an
extended period of time than experience the mood symptoms GETS
which I'm dealing with today. EDS is a thug and
it better back up before my birthday. March ninth, twenty sixteen.

(01:18:29):
Really easy to explain fibro plus DS. You know those
days you go to the work with the flu and
you drag through and you barely make it. That's my
everyday life. March third, twenty sixteen. Does my new parking
placard make my butt lock fat? March eighteenth, twenty sixteen.

(01:18:55):
This entry will just show how involved being chronically ill is.
It's a job man. One specialist appointment down, five to
go in the next five weeks or so. Lumps in
my arm benign disturbing, but benign. I can now say
that I've had my elbow and forearm ultrasounded. Did I

(01:19:15):
make up a word. Rheumatologists also took several whiles of
my sweet sweet blood for hash and MOTOS tests. Next
up pain follow up talking about cannabis. Yeah, baby, only
legal in Virginia right now for people with seizure disorders.
Darn it. Mammogram endo chronologists eyes continue testing to make

(01:19:36):
sure that blurriness is due to EDS and not to degeneration.
Gynecologists searching from last time, plus neuropsychological testing and progress
playing phone tag to set appointment. So basically, I'm a
fussy little foreign car of ew at pougeot cute as
a button needs tinkering every damn day, has to go

(01:19:57):
to special garage just for every little thing, because but
it's worth it because the neighbors are jealous. Room broom,
looking backwards and forwards is important for mental health and
badness balance, but sometimes it can give you a jolt
like this, Thanks Facebook memories, May fifth, twenty sixteen. This

(01:20:22):
shows you how fast my body had deteriorate has deteriorated
thanks to edes is doubling down. I don't know what
started the shift from mill to severe, but three years
ago I was exercising every day, twice a day, yoga
at bedtime every night, and either walking or more yoga
during the day. This was day five, but I continued
for such a long time and I loved it. Enjoy

(01:20:44):
your body and how it looks and what it can
do every single moment. And the memory is May fifth,
twenty thirteen, Day five brisk mile with my exercise partner Ellie.
The dockson and it's a photograph of the beginning of
the Virginia bly Ridged Railway trail. May fifth, twenty sixteen,

(01:21:09):
EDS Awareness Month. There are six types which add to
the lack of knowledge. I have hypermobility type. I cannot
tell you the dismay when after diagnosis I go to
a new specialist and I have to spell it, nor
the joy and relief when the opposite occurs. Remember doctors
are not authority figures. They work for you. And the

(01:21:31):
meme posted is EDS Random Fact number twenty six. When
we start developing symptoms, most of our tasks come back
as normal and it feels awful. Most people think it's
all in our heads or we give up on finding
a diagnosis. August seventeenth, twenty sixteen, Quick doodle for fun.

(01:21:53):
My purse is as sistive device, Mymochi to grams better together,
cross shoulder bag stays balanced when I use my cane
and at last flat when still strapped on when I'm seated,
out of the way, out of my way and the
way of medical professionals trying to do their job. And
what's in my bag? Anything I might need from my
medical lug which includes emergency infos, all doctors, plus all

(01:22:14):
my meds and appointments to m kindle from dry mouth
medicated lozenges to my guardian doll, which is a treasured
gift gift from Jill and Chase. And yes I do
keep my extra pain meds in a Freud pillcase. And
I will upload this picture to the website for this episode.
October eighth, twenty sixteen. Donal work with EDS is insane.

(01:22:40):
I haven't wanted to complain about it, but I have
work done two weeks ago and I've been in severe
pain ever since. I've been back once already, I go
back again on money Monday. It's nothing that dentist has
done wrong. It's acidine immune system and damage dysfunctional collagen.
And this is the time that my body decides it's
two accustomed to my oxy pain medicine. Breakthrough pain is

(01:23:04):
such a benign term. This is something that's expected to happen,
but the timing's just hilarious. So third dunist appointment on Monday,
pink clinic on Tuesday. I hurt every single day, but
not like this at an eight or eight and a
nine and not in my face and head. That's where
I live. Man February fourteenth, twenty seventeen, turning my old

(01:23:32):
Fellowfax into a help myself journal. Details of teas and
essential oils and how they can assist mymids empowerment. Y'all. Yeah,
I made myself laugh. I do that a lot. The
note in the upper right starts with the Katy Perry
lyric and ends with my snark. What it says is, baby,
you're a firework. Not really, just try not to nap

(01:23:53):
twice it one day, April twentieth to that Since seventeen,
yesterday's pilgrimage was successful, I feel validated and much safer. Yes,
on top of hyperbability, earl s download syndrome and fibromyalgia,
I have pots. My new specialist is a superhero. Seriously,

(01:24:16):
if you need help and can travel to Richmond, Virginia
hit up doctor sikat At VCU. He has several patients
that are managing some form of EDS with some form
of dys automia, which is what POTS is. Basically, it's
postural cardiac problems. I stand and my blood doesn't move
with my body, so I feel woozy. I might faint.

(01:24:39):
Weird stuff happens any postural change. It can be an
intense sneeze, that can be mean laughing, really hard anything.
It's not cute. I have to take my blood pressure
standing and sitting for a week and send it to him.
That determines the course of medication we choose. The list
on the right is a list of POTS symptoms called
for three different plays. It represents for me, either symptoms

(01:25:02):
that have never been addressed or symptoms that have not
been fully addressed by current treatment, every single one. Thank you,
doctor Seca. Let's do this. I will also add this
image to the episode's website entry. And then this was
last Monday, Chronic Disease Awareness Day. I have HID for

(01:25:23):
my ability tight earls. DOAMLAS along with POTS, which is
postural orthostatic tachycardia syndrome. The reason the EDS mascot is
a zebra? Is that in med school, doctors are taught
when you hear hoof beats think horses. Well, sometimes hoof
beats do signal a zebra, and that should never be discounted.

(01:25:43):
What does that mean for my everyday life? I feel
some kind of pain twenty four to seven. Yes, all
the time when I'm performing my podcast, Yes, laughing with you. Yes,
A really good day for me is the day you
would waffle on calling and sick from work. Should I
or no? I have assistive devices, including a cane wheelchair

(01:26:07):
and braces that keep certain joints from bending too far
the wrong way too regularly, like my fingers and knees.
I don't need all of them all the time. It
is painful to me when people fake injury or illness.
I walk through fire for the right to say that
I'm chronically ill and to get the good parking spaces.
I'm stronger now than I ever thought I could be,

(01:26:28):
and I'm a much better, kinder, more spiritual person for
being chronically ill. I wouldn't trade it. And I'm running
this down to remind myself when I hit the top
of the pain chart next time, because I will forget
last Wednesday? Can money pay for all the days I
lived awake but half asleep? How strange that I feel

(01:26:52):
more alive chronically ill and semi home bound, type in
my thoughts and talking into a microphone. Chronic pain woke
me up, and I don't ever want to go back.
I will never not love this song. The song mentioned
Zebra Flesh, but an odd coincidence. It's primitive radio gods
standing by a broken phone booth with money in my hand.

(01:27:17):
I will put links on this episode's entry that simply
explain what Earl's downlets have a mobility type pots and prepermalage.
You are if you're interested and know that everything I've
read is only a snippet, and only a snippet of
what I shared online and with other people at all,
other than my best friend. I use is usually managed

(01:27:37):
to be funny or at least reasonably calm aby expressing
myself about setbacks and days when I have plans when
my body shut down, but not always. Sometimes there's anger
and flat out really ugly crying. But it is really strange, magic,
indeed disabled, That's what I'm supposed to be. I don't

(01:28:02):
understand it either, I mean, I don't want to be
in pain twenty four to seven. I'm no masochist and
I'm no martyr. But as I said in that last entry,
chronic pain woke me up somehow, and I'm really glad
to be awake to claim my share of the cupcakes
and to help other people find theirs, hopefully. I have

(01:28:22):
a theory that i'd like to error here if I may.
What is it you think that makes you magicians? More silence,
he spoke more softly. Is it because you're intelligent? Is
it because you are brave and good? Is it because
you're special? Maybe? Who knows, But I'll tell you something.

(01:28:45):
I think you're magicians because you're unhappy. A magician is
strong because he feels pain, He feels the difference between
what the world is and what he wouldn't make of it.
A magician is strong because he hurt more than others.
His wound is his strength. Most people carry that pain
around inside them their whole lives, until they kill the

(01:29:06):
pain by their means, or until it kills them. But you,
my friends, you found another way, a way to use
the pain, to burn it as fuel for light and warmth.
You have learned to break the world that tried to
break you. Love Grossman. The Magicians

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