#medicaldiary — Public Fediverse posts

I was out of the house almost all day.

But I performed Guernica I and II from memory at the last Honeybee Sage open mic of the summer. I’ll probably post the video of it tomorrow. For now, however, I’m exhausted.

Goodnight, y’all.

-Allēna

I was out of the house almost all day.

But I performed Guernica I and II from memory at the last Honeybee Sage open mic of the summer. I’ll probably post the video of it tomorrow. For now, however, I’m exhausted.

Goodnight, y’all.

-Allēna

I probably did too much today.

But I had therapy for the first time since March  and it felt productive? My therapist suggested that I reach out to my doctor about getting an anti-anxiety med to make blood draws easier, and I just might do that.

We also talked about my increase in energy since adding the H2 blocker to my med regimen and all the fears I have that we’re gonna crash mentally and physically in the next week or so, and he walked me through what the worst case scenario would be (I’d survive, it would just be shitty because I would have to go back to the drawing board all over again). I still can’t tell if the conclusion we reached was comforting or not.

I’m debating whether or not I should shower tonight because it’s 2 AM, the only real towel we have in the house is disgusting, and frankly, I am getting tired. In any case, I should probably wander off.

Stay tuned for more magic, y’all.

-Allēna

I probably did too much today.

But I had therapy for the first time since March  and it felt productive? My therapist suggested that I reach out to my doctor about getting an anti-anxiety med to make blood draws easier, and I just might do that.

We also talked about my increase in energy since adding the H2 blocker to my med regimen and all the fears I have that we’re gonna crash mentally and physically in the next week or so, and he walked me through what the worst case scenario would be (I’d survive, it would just be shitty because I would have to go back to the drawing board all over again). I still can’t tell if the conclusion we reached was comforting or not.

I’m debating whether or not I should shower tonight because it’s 2 AM, the only real towel we have in the house is disgusting, and frankly, I am getting tired. In any case, I should probably wander off.

Stay tuned for more magic, y’all.

-Allēna

I went to my long expected GI super-specialist appointment yesterday.

They’ve ordered a lot of tests, including a proper test for MCAS and an upper GI scope. The week beforehand is gonna be hell on earth but I am hoping it’ll be worth it…

-Allēna

I went to my long expected GI super-specialist appointment yesterday.

They’ve ordered a lot of tests, including a proper test for MCAS and an upper GI scope. The week beforehand is gonna be hell on earth but I am hoping it’ll be worth it…

-Allēna

The dual antihistamine experiment continues..

AND I WAS ABLE TO HAVE CAFFEINE TODAY FOR THE FIRST TIME IN ALMOST A YEAR WITHOUT REACTING POORLY

I DIDN’T NEED A NAP, EITHER

I haven’t been this happy in a long time.

-Allēna

The dual antihistamine experiment continues..

AND I WAS ABLE TO HAVE CAFFEINE TODAY FOR THE FIRST TIME IN ALMOST A YEAR WITHOUT REACTING POORLY

I DIDN’T NEED A NAP, EITHER

I haven’t been this happy in a long time.

-Allēna

The H1/H2 blocker experiment appears to be working well so far.

I took both today and I was significantly less tired  this afternoon. I’ll see how I feel tomorrow.

-Allēna

The H1/H2 blocker experiment appears to be working well so far.

I took both today and I was significantly less tired  this afternoon. I’ll see how I feel tomorrow.

-Allēna

Soooo I might have found another missing piece to my health puzzle…

I was watching a Tawny Platis video and I heard her talk about how she had started on H1 and H2 blockers after thoroughly researching MCAS. Well, it turns out I’ve been taking an H1 blocker (loratidine) for over a year for suspected MCAS and related issues, but I didn’t think to take an H2 blocker, although that’s kind of genius. So Emerson will likely pick me up an H2 blocker once he gets paid. I will keep y’all posted.

-Allēna

Soooo I might have found another missing piece to my health puzzle…

I was watching a Tawny Platis video and I heard her talk about how she had started on H1 and H2 blockers after thoroughly researching MCAS. Well, it turns out I’ve been taking an H1 blocker (loratidine) for over a year for suspected MCAS and related issues, but I didn’t think to take an H2 blocker, although that’s kind of genius. So Emerson will likely pick me up an H2 blocker once he gets paid. I will keep y’all posted.

-Allēna

Soooo I might have found another missing piece to my health puzzle…

I was watching a Tawny Platis video and I heard her talk about how she had started on H1 and H2 blockers after thoroughly researching MCAS. Well, it turns out I’ve been taking an H1 blocker (loratidine) for over a year for suspected MCAS and related issues, but I didn’t think to take an H2 blocker, although that’s kind of genius. So Emerson will likely pick me up an H2 blocker once he gets paid. I will keep y’all posted.

-Allēna

I got blood work done today.

Also, fuck the sun. I almost fainted. At least we have cool air in the apartment now.

-Allēna

I got blood work done today.

Also, fuck the sun. I almost fainted. At least we have cool air in the apartment now.

-Allēna

The things I do for content..

Today, that was getting sunsick. Emerson and I went to a bookshop downtown after our original plans fell through, and I got…kind of irradiated making a video while I was waiting for him to finish up inside.

I have to be awake at 10 AM tomorrow for writer’s group and I did not nap today like a fool.

Pray for me, if you’re into that. If you’re not, send me good energy, I guess.

I need to shut my eyes now. I am so, so tired..

-Allēna

The things I do for content..

Today, that was getting sunsick. Emerson and I went to a bookshop downtown after our original plans fell through, and I got…kind of irradiated making a video while I was waiting for him to finish up inside.

I have to be awake at 10 AM tomorrow for writer’s group and I did not nap today like a fool.

Pray for me, if you’re into that. If you’re not, send me good energy, I guess.

I need to shut my eyes now. I am so, so tired..

-Allēna

“a beginner’s guide to splitting your brain”

when I said you’d be the death of me,
I was being literal. the left side of me is
a ghost, wrath kept it in the divorce
twenty eight years ago
when I was too young and stupid
to know what a prenup was
and I’ve been giving away pieces of me
since
when I promised you my hand, I was being
literal
keep it, preserve it in any way you want
after I am gone
whether you wear my bones as a talisman
to remember me, half dead haunted pipe organ courtesan assassin
or calcify it
like percy bysshe’s heart
to remember me by
when my time bomb mind decides to explode
and you outpace me on this race to the edge

when I said you’d be the death of me, I was
being literal. the two halves of my body
run on syncopated time
an unexpected eighth note in my limp
when my left foot drags behind my right
an odd time in my step
my right hand moving my left in time when
it balls up and refuses to obey any longer
even my brain has changed shape from
the stress of it all that I once called the thrill
but gods’ honest truth is that I think it’s
slowly killing me although I breathe for it
and I don’t remember how I got the will
to stay alive
I am no more god than ozymandias but I am
by no means fragile
I can and would walk  through a hurricane and dance barefoot on sea glass to have you
believe I love you and know I mean it
and even though the spring sun may singe
the skin of this transmasculine tragedian
troubadour
it will take far more than heat and pressure to break me

and when I am gone, remember me as
a mountain of madness
remember me as a three legged hare who
decided to roar
remember me as one who fought for you
fought with you, fought death, did not go gentle
became the whirlwind, became the lightning,
and was the one that the lightning struck back.
remember me as the human unchained
the one who walks free
remember me as the one who shot the moon
and took the stars and brought them down for you
remember me as a hurricane, the madwoman
in the attic, the singer of morning
molten golden light,
the one in the ring who feared not the brave pain
and stood tall and bellowed at two generations of fire anyway,
the conjurer of shape and smoke
and color, the one who dared to split my mind
to walk in tragedy
to write my own eulogy
and take up fucking space anyway
remember me while I am here
remember me now
remember the life of me
while I still breathe

“a beginner’s guide to splitting your brain”

when I said you’d be the death of me,
I was being literal. the left side of me is
a ghost, wrath kept it in the divorce
twenty eight years ago
when I was too young and stupid
to know what a prenup was
and I’ve been giving away pieces of me
since
when I promised you my hand, I was being
literal
keep it, preserve it in any way you want
after I am gone
whether you wear my bones as a talisman
to remember me, half dead haunted pipe organ courtesan assassin
or calcify it
like percy bysshe’s heart
to remember me by
when my time bomb mind decides to explode
and you outpace me on this race to the edge

when I said you’d be the death of me, I was
being literal. the two halves of my body
run on syncopated time
an unexpected eighth note in my limp
when my left foot drags behind my right
an odd time in my step
my right hand moving my left in time when
it balls up and refuses to obey any longer
even my brain has changed shape from
the stress of it all that I once called the thrill
but gods’ honest truth is that I think it’s
slowly killing me although I breathe for it
and I don’t remember how I got the will
to stay alive
I am no more god than ozymandias but I am
by no means fragile
I can and would walk  through a hurricane and dance barefoot on sea glass to have you
believe I love you and know I mean it
and even though the spring sun may singe
the skin of this transmasculine tragedian
troubadour
it will take far more than heat and pressure to break me

and when I am gone, remember me as
a mountain of madness
remember me as a three legged hare who
decided to roar
remember me as one who fought for you
fought with you, fought death, did not go gentle
became the whirlwind, became the lightning,
and was the one that the lightning struck back.
remember me as the human unchained
the one who walks free
remember me as the one who shot the moon
and took the stars and brought them down for you
remember me as a hurricane, the madwoman
in the attic, the singer of morning
molten golden light,
the one in the ring who feared not the brave pain
and stood tall and bellowed at two generations of fire anyway,
the conjurer of shape and smoke
and color, the one who dared to split my mind
to walk in tragedy
to write my own eulogy
and take up fucking space anyway
remember me while I am here
remember me now
remember the life of me
while I still breathe

I feel like I didn’t do much today because I got FUCKING SUNSICK. AGAIN.

My face fucking went numb in the process as well. Can the universe stop with this bullshit already??? This summer is gonna suuuuck if this keeps happening..

-Allēna

I feel like I didn’t do much today because I got FUCKING SUNSICK. AGAIN.

My face fucking went numb in the process as well. Can the universe stop with this bullshit already??? This summer is gonna suuuuck if this keeps happening..

-Allēna

I’ve been so tired today.

I posted a video asking about what some guy issues I’ve been having might be being caused by, and the resounding verdict seems to be my  gallbladder. So I guess that means greasy food – including the spicy Italian sandwich I got from Subway earlier – should probably be out of the question.

We’ll see.. I am a slut for pizza, and sometimes grease is worth the pain.

I made an appointment to talk about this further with my PCP, and I should be seeing her next week I think.

Wish me luck, I suppose.

-Allēna

I’ve been so tired today.

I posted a video asking about what some guy issues I’ve been having might be being caused by, and the resounding verdict seems to be my  gallbladder. So I guess that means greasy food – including the spicy Italian sandwich I got from Subway earlier – should probably be out of the question.

We’ll see.. I am a slut for pizza, and sometimes grease is worth the pain.

I made an appointment to talk about this further with my PCP, and I should be seeing her next week I think.

Wish me luck, I suppose.

-Allēna

Well, we tried to go to an open mic in Rockford, IL this evening.

But it turned out to be canceled. So I’m just curled up watching Stargate again with a massive headache.

-Allēna

Well, we tried to go to an open mic in Rockford, IL this evening.

But it turned out to be canceled. So I’m just curled up watching Stargate again with a massive headache.

-Allēna

I had my long expected neurology appointment today.

Based on the EEG and observations, the seizures look nonepileptic, but we’re getting an MRI on the 28th just in case and to establish a new baseline on the Brainhole anyway. The poor, sweet doctor was taken aback when I attempted to describe the differences in feeling between the right and left sides of my body. I don’t think he’d seen anything like it yet.

Overall things went pretty well. He also suggested keeping a headache diary, so if I have a bad headache that day, I’ll do my best to write it down here, as well as what I think the trigger is.

-Allēna

I had my long expected neurology appointment today.

Based on the EEG and observations, the seizures look nonepileptic, but we’re getting an MRI on the 28th just in case and to establish a new baseline on the Brainhole anyway. The poor, sweet doctor was taken aback when I attempted to describe the differences in feeling between the right and left sides of my body. I don’t think he’d seen anything like it yet.

Overall things went pretty well. He also suggested keeping a headache diary, so if I have a bad headache that day, I’ll do my best to write it down here, as well as what I think the trigger is.

-Allēna

I had my long expected neurology appointment today.

Based on the EEG and observations, the seizures look nonepileptic, but we’re getting an MRI on the 28th just in case and to establish a new baseline on the Brainhole anyway. The poor, sweet doctor was taken aback when I attempted to describe the differences in feeling between the right and left sides of my body. I don’t think he’d seen anything like it yet.

Overall things went pretty well. He also suggested keeping a headache diary, so if I have a bad headache that day, I’ll do my best to write it down here, as well as what I think the trigger is.

-Allēna

I had my long expected neurology appointment today.

Based on the EEG and observations, the seizures look nonepileptic, but we’re getting an MRI on the 28th just in case and to establish a new baseline on the Brainhole anyway. The poor, sweet doctor was taken aback when I attempted to describe the differences in feeling between the right and left sides of my body. I don’t think he’d seen anything like it yet.

Overall things went pretty well. He also suggested keeping a headache diary, so if I have a bad headache that day, I’ll do my best to write it down here, as well as what I think the trigger is.

-Allēna

I was out of the house almost alllll day.

And I feel like if I move my knee wrong, I won’t be able to walk on my right leg. This winter has aggravated my joints a great deal but this… It feels…bad…

-Allēna

#medicalDiary #sliceOfLife

Fatigue continues. I’m so eepy.

-Allēna

#medicaldiary

That EEG took me the hell out and I’m still tired..

Ironically, I had to miss an epilepsy themed open mic because of it. Still no results that I can see. -Allēna

#medicalDiary #neisvoid

I got my EEG today at long last.

Ow ow ow. My brainhole has been strobed 😭😭 but my results should come in tomorrow or soon afterwards.

-Allēna

#medicaldiary

“answer”

I could ask my body
what will I do when it has fallen
and regardless of which side I try and
coax, pry, cajole, or beat an answer from –
the deaf side or the silent one,
the answer is always the same:

it already has.

sixteen percent of my brain died before I was
a year old, I fought tooth and nail to keep
my own heart. (I was finally removed from
the transplant list when I was 12)
I’ve had to re-learn how to walk twice,
I spent this past july remembering
how to talk again
after nearly dying for the nineteenth
time. I couldn’t form a coherent sentence for
a month after a seizure episode approximately
twenty five minutes long
I’ve been everything short of shot
and sometimes I wish I had been
just to get the dying over with
because “what doesn’t kill you makes you
stronger” is a goddamn myth
sometimes what doesn’t kill you makes you
wish you were dead

the deaf side of my body and the silent side
are asymmetrical, imperfect mirrors of each other
an invisible remnant of the stroke in ‘98
I can feel the right side but it doesn’t often
tell me anything anymore because where it should’ve been able to talk my mother screamed
over it and told me I was faking my pain
and my sadness, my fear, that I was just
looking for attention, and it was beaten into
listening to her instead (she had a knack for
going for the face)
it took 24 years to fully break free and by that time
my mind had shattered as well

so, what will I do now that my body has fallen?
same thing I’ve done since I was a child.
rest, get up, do the damn thing again
and try to listen for better whispers

-Allēna 10/27/2025

#ActuallyADHD #actuallyAuDHD #ActuallyAutistic #mayswenson #medicalDiary #milwaukee #poetry #responsepoem #seizure #stroke #tbi

I got labs drawn to definitively check for a peanut allergy today.

We’ll see what happens.

I’m eepy now, though, so it’s probably nap time.

-Allēna

#allergicreaction #medicaldiary

I got labs drawn to definitively check for a peanut allergy today.

We’ll see what happens.

I’m eepy now, though, so it’s probably nap time.

-Allēna

#allergicreaction #medicaldiary

I was given a laaaarge nugget of CBD flower yesterday as a treat by an amazing guy at my favorite headshop.

Smoked a bit for science and it seems to greatly improve seizure brain symptoms. I always knew I loved CBD since about 2021, but now I love it even more. -Allēna

#bestHeadshopInMilwaukee #cbd #headshop #medicalDiary #weReCallingItTheNuggette_

I was given a laaaarge nugget of CBD flower yesterday as a treat by an amazing guy at my favorite headshop.

Smoked a bit for science and it seems to greatly improve seizure brain symptoms. I always knew I loved CBD since about 2021, but now I love it even more. -Allēna

#bestHeadshopInMilwaukee #cbd #headshop #medicalDiary #weReCallingItTheNuggette_

I think seizure brain is improving??

It’s slow going and I’m still experiencing symptoms, but they seem to improve the more I sleep, which makes total sense. -Allēna

#eepy #fatigue #medicaldiary #NEISvoid #postictal #seizure #tired

I think seizure brain is improving??

It’s slow going and I’m still experiencing symptoms, but they seem to improve the more I sleep, which makes total sense. -Allēna

#eepy #fatigue #medicaldiary #NEISvoid #postictal #seizure #tired

One full day post seizure and I feel like my brainhole is made of swirly raspberry ice cream….

-Allēna

#seizure #postictal #strokesurvivor #recovery #medicaldiary #whatamievendoing

#medicaldiary #postictal #recovery #seizure #strokesurvivor #whatamievendoing

One full day post seizure and I feel like my brainhole is made of swirly raspberry ice cream….

-Allēna

#seizure #postictal #strokesurvivor #recovery #medicaldiary #whatamievendoing

#medicaldiary #postictal #recovery #seizure #strokesurvivor #whatamievendoing