"Would you like a pastry today?  We're running a special, they're half price!"
​
My stomach has been rather uncertain all morning (I got sick a little first thing waking up) and I'm not particularly hungry, but I love pastries.  And a good deal.  So I tell the barista through the drive-through speaker, sure, do you have a cheese danish?
She asks if she can heat it up for me.  She is so bright, energetic, and seems genuinely happy.  I can feel her warmth and exuberance in her voice, through the brown speaker box.  I've been in a hazy brain-fog all day, but hearing her speak, I can't help but find myself grinning back at the box.  Contagious happiness.

Roots of problems: I haven't taken my meds (cymbalta: depression & anxiety, adderall: adhd) in two months 
Because I need to call for refills
But I also need to get a new PCM (Primary Care Manager), one who believes patients,
one who doesn't blandly tell me that I should have learned how to deal with my ADHD symptoms by now.
But to get a new PCM would be to make a phone call, or to find the website, a task, it's easy,
but executive dysfunction stands in the way, it's a symptom of ADHD,
You know, that thing my PCM said I should have just learned to manage on my own by now, because I'm an adult?
She literally told me that.  That if my ADHD was really "that bad," I would have gotten diagnosed sooner.
as if huge life-changing moments, 
like having a child,
or being diagnosed with, i dont know, cancer, twice,
or having one of the most invasive abdominal surgeries available,
or emergency bowel surgery,
or a global pandemic,
or just getting older and life progressing generally as it does--
as if life doesn't change and alter and so do your mental health needs?
So here's me, managing, on my own.

I eventually did get her to write me a prescription for Adderall
But so low a dose everyone else is surprised it works at all (but it does!)
(a testament to how dopamine-depleted my brain is, my therapist muses)
And with so much guilt and belittling and the reminder that if this doesn't work I'm SOL because she doesn't want to give me a higher script.  Just doesn't want to.  Doesn't feel it's necessary. 
Went so far as to lie to me about the maximum dosages; I checked with a pharmacist, and online, and my therapist.
And well, adderall is not working well enough but goddamnit it has to! It's all I can do!
Then the Rx runs out and to refill I have to talk to my PCM and so I just go off All Medications Completely
Which any doctor or person who has taken a mood stabilizer can tell you, 
Is a Bad Idea™️.
And apparently, it's my Trauma Season.
It was trauma Month (November), but I'm realizing a pattern between this winter and last:
At the end of October, start pushing away from everything and everyone. 
November: trauma month! I don't know what happens here because my brain DUMPS IT ALL it is a depressive haze
In November, Stop taking my meds. I'm depressed anyway!! They're oBvIoUsLy NoT wOrKiNg! Go off them all!
December: proceed with depressive haze, act surprised when my mental health goes down the shitter.
So we're in January now. I don't remember when things got better-ish last year, when I finally called my PCM.  March maybe?  Spring.
Is this just my pattern until I can resolve my trauma?  Shut down for five months out of the year?
​
Whenever that time comes this year, to get back on my cymbalta, I will also request the Provigil prescription I need, in lieu of Adderall.

Provigil was originally created to treat narcolepsy, but it can be used to treat other forms of chronic fatigue.
During the summer, before I had started the Adderall, my therapist had suggested Provigil to help manage both my ADHD and my chronic fatigue as a result of cancer.
"How like a nonprescriber," my PCM had scoffed at the recommendation, before begrudgingly giving me an Adderall Rx instead.
But now my oncologist also agrees Provigil is a good choice, he has seen several cancer patients doing well on it, and he agrees it could help manage my ADHD symptoms in lieu of Adderall--
​but I don't know the recommended dose and so I feel unprepared and anxious about talking to my PCM and this thought plays out every time I think of her because the roots are intertwined
And so I become an anxious puddled mess just thinking of any PCM exchange, any notion of getting back onto my medications that level the playing field for my brain throws me spiraling.  That's why I need back on the meds.  But I can't get on them, because I need them to get on them.  Or something.  it's cyclical and nonsensical and so frustrating because I am completely, horribly self-aware of all this mess.

but I can't do the things right now.

the haziness, drifting around the house confused, at a loss, it literally adds up to hours of my day.  i have no drive or ambition or purpose i am just foggy tired existing it's day to day but it's... minimal.  i want to be a person again but i can't right now.

I'm bouncing around a couple books right now, but one of them is Amanda Palmer's The Art of Asking.  In it, she speaks of her time as a human statue, The Bride, and how in a seemingly small exchange of money for a flower from her bouquet, she would see those strangers dropping money in her vase, truly look into their eyes and see them, their raw, naked souls, as she came to life and handed them a freshly picked flower in return.
And she would blink to them.  I see you.
And sometimes, they would blink back.  No one ever sees me.  Thank you.

It's not about the comped drink and snack.  I would have happily paid for them, was ready to.  It was absolutely a kind and so appreciated gesture that really compounded the experience; love me a coffee.
But it's about the connection.  
And it's about perspective.
I could easily say, "In a moment of weakness, I fell apart in front of a stranger taking my order."
Instead, I am taking this in as... in a shared moment of transparency and connection, one human who had an abundance of positive energy was willing to share that positivity to another human who was very obviously struggling.  To the benefit of both of us, I hope.
She could easily have taken my cancer patient urge to overshare and groaned and said "what a drag this lady is" like i really bummed the conversation out.  But she lifted me up.  In such a way that... I don't know how to describe her.  Jessica is brightness.

I haven't had a normal social life in over three years, since all the Medical Bullshit and the Pandemic came to fuck me up and lock me in.
My friendships, my social life, almost all live in my phone.  That's okay.  I'm glad to have that at all.
In those three years, what used to be "gets nervous at parties" has turned into full-blown "can't articulate words" and "railroads conversations" Social Anxiety when I'm around Actual Real-Life Humans.
It takes a lot for me to amp myself up to leave the house and I'm worried I'm going to become a shut-in and I'm terrified I don't know how to stop it.
But it's these little exchanges.  These moments with perfect strangers.
(I do like hanging out with my friends don't get me wrong)
But these beautiful, unplanned, happenstance moments where a perfect stranger
can see you, and be with you, even just briefly
when you can share that humanity with just any one person
it makes you, them, everything shine just a little bit brighter.

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I grew up with the notion that I was relatively healthy.
(Lol. Sweet ignorant bliss.)

I wasn’t even allergic to anything.
No foods, no environmental factors, no strange ingredients on shampoo labels.

The first time I ever had any sort of reaction
was during a routine CT scan at Johns Hopkins University,
where I went into anaphylactic shock and had to be rushed to the ER via ambulance.

It was my first ambulance ride, too.
Go big or go home, my body’s favorite motto.
It’s attempting to send me home in an urn, but never you mind that bit.

It was the middle of March, 2020, right at the beginning of the COVID-19 pandemic hitting America, and we were several hours from home.  I’d just turned 30 that weekend, although we didn't celebrate.  Too scared.  Rightfully, turns out.
Gage and Cake were not permitted into the hospital because of COVID (well, Gage was, but then who would watch Cake?), so they were waiting in our truck in the parking lot.

It had to be around my tenth CT at time—after all, I was there to monitor the growth of my tumors post-whipple, or whatever. I felt fairly confident walking in and doing something I’d done many, many times before. Silly me.

It had been going well. Routine. I was doing a great job of not moving and the tech or whomever came in and administered the contrast through my arm. I felt the familiar, warming flush throughout my body—but then it did not stop.  It became more intense, uncomfortably intense, hot, tingly, painful, and my tongue--

“My tongue… feels funny,” I say unsurely, out loud to the techs.

They say something over the speaker, they are coming in, wheeling me out, asking me questions, but I am already losing air, concentration, thoughts.

They pull me sitting upright and my head lolls limply to the side.
I think I might have giggled at the weightlessness of it all, so heavy and so stupidly dense and rolling and—vomit, over the side, my head convulses violently forward, spraying.

“I’m so sorry!” I manage to weep, slurring at the woman who I cannot focus on, but I hear her voice, reassuring me that they are getting help, it’s okay, you’re going to be okay, okay baby?

I hear someone demanding an epi-pen, I think the woman in front of me.
An older man’s voice retorts that I’m coming out of it and we don’t need an epi-pen, is there even one in here? The ambulance is already on it's way.

There has to be an epi-pen, doesn’t there? A rare but possible side-effect of having CT contrast repeatedly injected into your bloodstream is one day, today as it is, your body can potentially decide that it doesn’t want that foreign body injected in you anymore, and then attacks it. …violently, in my case. You have to sign a waiver acknowledging this risk every time you get a CT scan. I had just signed it fifteen minutes ago, so certainly this dude who was not at all concerned about my throat clamping shut on me knew this as well?
Evidently not.
Far be it from me to know about my risks.

“I’ve ruined your whole day,” I continue slurring an apology to the kind tech propping me up, splattered in my vomit.
“Oh no sweetheart you’re not ruining my day!”
“Yeah,” I manage, “your shoes.  And who wants their patient…” I go out for a little bit, come back “—am I, am I going to die from COVID?” I croak, suddenly panicked, realizing the ambulance means another hospital, potential exposure to a virus we do not yet understand (and will absolutely underestimate).
She assures me that I will not.
She was right, thankfully.

I begin sobbing about my baby, my baby is here. 
I can't die, my baby is here. 
​She talks to me about Cake, reminding me that I need to wake up, stay here, stay conscious with me baby, tell me about your daughter, how old is she?

I'm familiar with this technique now, of talking someone through an event;
pain or shock, panic attacks, or when you need them to not pass out because maybe then they die.
Through having abscesses packed and stitches sewn in, I've been taught to talk through pain.

The first time, when they woke me up from my Whipple in the ICU, I was so confused. 
My name?  The day's date?  Where I am located?
Why are you asking me such stupid questions?
I'm... shit, what the fuck is my name?
I'm in a hospital.  Yes, I know where I am.  I had surgery.

Even knowing what they are doing, the importance of the questions,
in the moment, it can be hard to answer.
Even knowing the answers in my head, I don't want to answer out loud.
Form words.  Use my mouth, my voice, my head.
No.
That's energy I do not have right now, because I am
(drugged out of my mind in the ICU and the doctors are whispering that they have got to figure out my meds because I am either comatose or screaming, and murkily i wonder, what's wrong with sleeping?  the meds are fine...)
No,
​i am at Johns Hopkins,
my baby is five,
and i am trying to answer
but it's a lot of work just to keep my eyes open,
just to keep my lungs moving.

CT scans are the predominant means of measuring tumor growth and changes.
With each exposure to iodine contrast, you increase your risk of having a severe reaction.
It's rare for this to happen.
Basically, it doesn't, it's just an agreement you sign the waiver for, but they have to warn you.
but it happens to me, because, of course.
I've become used to hearing "you're my first patient who ever _______"

For whatever reason, none of my medical team seems to take this seriously, except the radiologist.  
oncologists continue to order CTs, to which I continue to explain to them I cannot have a CT
to which they tell me you can pre-medicate with benadryl.

....which is true
for minor reactions
not life-threatening 
acute anaphylactic shock.

it is 
incredibly
maddening
trying to explain
to a doctor

who should know, probably,
what anaphylaxis is,
who should understand
why the radiologist won't approve of pre-medicating someone who is going to actively try to die on them,

or could perhaps share 
some shimmer
of empathy

when the fear creeps into my eyes
and my breath quickens
my knuckles turn white
and i curl inward instinctively
i bare my teeth down
i want to scream but instead it comes out
soft
passive
i don't think i can do a CT,
shaking my head.
no no no don't think i can do that.

"we have to have
some sort of baseline,
some recent measurements,"
the doctors explain,
and it makes sense.

i do PET scans.  I had them before, now that's just what we use, no CTs.  But the extraordinary amount of work it took to get my doctors to listen to me, to take me seriously about a life-threatening reaction that would be compounded in severity each time; having to relive the experience to them, reliving the trauma--
just believe me, i am incredible aware of what is going on with my body, i know when something is wrong.

i know i am not the only one here.
i am so tired of doctors not listening to patients.
of doctors not listening to women.
of men not listening to women.
of people not believing victims.

i'm tired.
i think a lot of us are really
really tired.

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