take-my-revolution

[take-my-revolution]

desperate clarity

i think i must be dying.

there’s no other answer at this point.

i keep getting worse.  i can’t stop crying, why should i?  i can’t fall asleep at night or get up in the morning.  i can’t eat.  i can’t think.  the days and months are all running together now.

i wake up every morning and it’s like i wonder what new ability i will lose today.  maybe i won’t be able to see, or hear, or sit up.  maybe today is the day that finally breaks it.  breaks me.

everything that i enjoyed is gone.  i can’t walk without getting tired.  i can’t concentrate enough to do a puzzle.  showers exhaust me.  i’m pretty sure i couldn’t get turned on if i tried.  food doesn’t carry any reward.  sleep is not a refuge.  tv shows and movies irritate me.  i can remember being happy but it seems so far away, and irretrievable.

my lower back hurts, and my vaguely-defined stomach area hurts too.  but not in a hungry way, just in a malcontent fashion. 

can i enter a hospice program without a diagnosis?

i figure sooner or later if nothing else does, my heart will give out, and that’ll be it.

part of me is angry, but not much, any more.  it’s just what i’ve come to expect.

a tortured childhood.  then i beat ptsd, then i beat depression, then i sort of side-stepped adhd but goddamn it i had a full-time job and i was doing things.  maybe not really well, but i was doing them.

then everything went to shit.  again.

will i live to see 37?

does it even matter?

[take-my-revolution]

because it can always get worse

don’t ever say ‘well, now i’ve hit rock bottom, nowhere to go but up’

because it never is true.

over the last few days it’s become increasingly harder to eat.  i know i haven’t had any appetite for ages, but now it’s gotten worse.  i can’t even force myself to start eating.  usually that’s the challenge, and once i start eating, i can finish.

yesterday i made some black beans for lunch, with some cheese and salsa.  and then i couldn’t eat it.  i tried, and tried and tried, and cried a lot too, but i couldn’t eat it.  just couldn’t start.

two hours later, kim made some tortellini and i forced myself to eat about 15 of them.  it was again very hard to start but i did manage to.

then i managed to eat about a quarter of the broccoli i would usually have for dinner.

that’s not much.  i think it added up to about 500 calories on the day.  actually, less.

so now this morning i made certain that i ate my oatmeal, because i don’t know when the next time i’ll be able to eat is.  i even put some walnuts in it.

i don’t know what’s wrong.  i don’t think this is cushings.  i feel like it’s probably something terrible, though.

[take-my-revolution]

....

doctor continuing workup for cushings because he has no better ideas.

ok...?

part of my issues may be vitamin b12 deficiency, although my August CBC reflects normal values concerning red blood cells and their hemoglobin.  vegetarians often don’t get enough b12 because it’s found only in animal products--vegans must take supplements.  i got some b12 vitamins on wednesday and took them yesterday for the first time.  obviously too soon to say whether or not they make a difference.

what does clearly make a difference in at least my emotional state is sleep.  if i manage to get semi-decent sleep, i’m a lot more stable.  on top of that, if i force myself to eat frequently enough, i’m even more stable.  not perfect, though.  it doesn’t solve the root problems, though.  why don’t i have an appetite.  why is my mouth dry.  why are my blood pressure and heart rate so high.  why can’t i lose weight.  why am i exhausted and fatigued but still can’t sleep well.  and why i got so weak.  where’d my sex drive go.  etc etc etc.

it really almost has to be some sort of systemic hormone issue, but cushings is the only one i know of that fits even remotely.

[take-my-revolution]

is it just me

or is crying from 9:30 am until 2 pm likely indicative of a problem?

not sure if i just ran out of tears, or i actually did something to help the issue.

bless his little dumb heart, my doctor has decided that i don’t have cushings after all.  he doesn’t know what i have.

just like all the others.

hi, square one.  nice to see you again.  for the millionth time.

just over here chillin, waiting to die.  or for something to go wrong enough that i finally can get hospitalized, i dunno.  something’s gotta give, right?

[take-my-revolution]

well, if it were easy

it wouldn’t be my life

i suppressed really low on the dex.

now dr. ben doesn’t think it’s cushings.  maybe it’s not, but if it isn’t, then what the hell is it?  i demand answers.

i demand...something.  i demand better than this shit.

[take-my-revolution]

things i miss

i was totally going to make a list of all the things i miss being able to do but it’s like everything, so what the hell is the point.

it started like, naps.  i miss being able to nap.  can’t do that any more.  and then i was like, yeah, i also miss the feeling of being hungry and then you eat and it tastes so good!  and then i realized that i miss everything about being healthy.  or less sick.  than i am now.

i miss climbing two sets of stairs without getting winded and out of breath

and i miss not getting frustrated over dumb things like i can’t figure out how to fold this t-shirt

and being able to enjoy long, hot showers because now they just tire me out

i miss being able to read

and do crossword puzzles

or sudoku

i miss walking into a room and being able to remember wtf i walked there for.

i miss being able to remember words and not sounding like a total moron on the phone trying to remember words like ‘bill’ and ‘results’...’thing’, i say.  ‘the thing, that, you, uh, I don’t know.’

i miss being able to feel happy.  now it’s just either tired, irritated, depressed, or some combination of all three.

i’m aware in the back of my mind that i should be writing my advanced medical directive, but i can’t quite get to it.  i kinda know what i want.  basically what most people want.  resuscitation is fine, but i don’t want to be a vegetable.  if i’m at the point where i’m unlikely to return to functionality, just let me tf go, and hope that at least some of my organs are still salvageable.

[take-my-revolution]

hey, you know what else would be fun?

starting to be anorexic again!

no, not actually.  i’m trying to avoid it.

but it’s hard to do.  because the advice with the supposed pcos was that i needed to eat fewer carbs and more vegetables, and i managed to turn that into a contest of eating as few calories a day as possible.  it’s easy to do when you’re not hungry anyway.  i figured if the point of fewer carbs and more veggies was lower calorie intake, why not just skip the middle man?

so yes, now i eat usually fewer than 800 calories a day.  some days around 600.  some days closer to 1000.  it has been, of course, totally ineffective in losing weight, because as i’ve discovered, i have excessive cortisol.  this makes any method of losing weight pretty much a no-go.

it doesn’t stop me from trying.

kim talked to my grandmother today.  who had apparently not been told by my mother about my health issues.  i maybe jumped to conclusions but i know bubbe has been worried about my weight.  and doesn’t understand that a lot of the gain was due to antidepressant medications, and now the failure to lose it is due to cortisol.  i don’t know what actually went on in the conversation, i just know that i took away from it that i was being fat-shamed.  which is great.

anyway.  yeah.  fourth or fifth crying spell today.  that’s nice.

[take-my-revolution]

pressing questions

why is there so much funding for places like shriner’s hospital for children and st jude’s?  to the point that children get free medical care?

first off, i get that childhood disease is heartbreaking.  like, i can’t even imagine the pain of being a parent seeing your child suffer that way.  i CAN imagine what it’s like to be a child who feels like they’re missing out on x, y, z, though, because i was.  i didn’t have leukemia, i had david.

but given the relative prevalence of these rare childhood cancers, and the prevalence of, say, childhood sexual abuse, i feel like the huge amount of money these organizations have is kind of misplaced.  why not divert some of those funds to improve the foster care system?  why not divert some of those funds to care for kids who might not have literal cancer, but who are just as affected by poverty, abusive households, and other social ills?

i guess it’s nice that kids can get free medical care for nasty and complicated diseases.  why can’t adults, though?  is it because we’re just not cute?  because we’ve already lived our lives? (i’m 36, bitch, i haven’t lived my life)  shouldn’t their parents have medical insurance anyway?  i mean, no, it doesn’t come close to covering the costs of care, but that’s no different for children than for adults.

if i do end up having cushing’s--that’s a rare and nasty disease.  this is not something that either of the local mega-hospitals are equipped to treat.  between the two of them, they don’t even have any specialists who are equipped to DIAGNOSE this bitch, let alone perform the complicated brain surgery to get the tumor out.  i may be able to get the surgery done as close as chicago or indy.  or i may need to go to cleveland, or milwaukee, or even minnesota.  hopefully i don’t need to go as far as one of the coasts, but i might.

why is there not a free hospital for me?  ok i know.  i’m having a pity party.  but i honestly can’t help it.  for reals.  i fought to survive my childhood and adolescence.  then i fought depression and crippling ptsd.  then i began the epic struggle with adhd.  FINALLY it seemed like i was coming out on top, i had a job, i kind of even had a few friends, my social life didn’t totally suck...and then, wham, here you go, have a mysterious disease that no one seems to be able to diagnose. 

i should have known i wasn’t in the clear.  why would my life finally start not to suck?  that doesn’t happen.  not to me.

[take-my-revolution]

this, like everything else, is bs

the doctors say that if there was solid evidence i was dying, they’d do something about it, and since there isn’t, they’re going to take their thanksgiving long weekends.

i’m pretty sure over here that this is what dying feels like.

oh, you can’t take the dog on a fifteen minute walk because you can’t stop crying or rapid cycling between irritated and crying?

and you haven’t had a good night’s sleep in months? the ambien doesn’t help any more.

i would threaten to hunger-strike, it’d be easy too, but the doctors would just be like, shut up bitch, you fat already, missing a few meals wouldn’t hurt.

[take-my-revolution]

i thanked my sgiving

i guess.

more calories than i have eaten in so long.

and then today i am sooo tired and weak.  and shitty feeling.

my heart rate was really too high almost all day yesterday, not sure why.  kim thinks excess sodium in the food?  could be.

of course that means i burn more calories, but if weight loss were as simple as burning more than you put in, i’d be skinny by now.  mostly it just means that i’m tired.

my mouth is dry.  yuck.

why is monday so far away?  you can bet i’m going to be nagging the fucking doctor about where my dex results are.  i hated the way i felt on the dex and i will be really pissed if i have to repeat it because some moron screwed up the blood samples.  i will probably have to have another dex test as some point anyway to rule out pcs which will be longer, oh joy, but i will do that if i have to.  having to redo this one just because someone else can’t follow fucking procedure is not okay, though.

i hate waiting.

maybe if somebody had taken me seriously lo these five months ago i would be more patient now.

[take-my-revolution]

yeah so there’s this thing

where i’ve gotten older but definitely no wiser.

how to sum up the year?  it started ok.  i really think it did, but it could just be the brain fog.

then increased anxiety.

then lowered energy

then i couldn’t lose weight no matter how well i ate and i was walking 7+ miles a day

then i got the dry mouth.

then i got even less energy

then i couldn’t sleep

shortly thereafter i didn’t want to eat any more

it’s all been downhill from there, man.  oh, the doctors whose time i have wasted.  oh, the doctors who have wasted mine.  the hoops i have jumped through! to be taken seriously.  heaven forbid that a fat woman with depression have any sort of actual medical issue.

and now it’s the day before thanksgiving, and i’m impatiently waiting for blood work results that should have come in on friday.  they’ll either say: congrats, babe, you’ve got cushings syndome! or they’ll say: this test was inconclusive and we need to...do more tests.  well, that is what the results will say TO ME, because i know how to research stuff.  my doctor does not.  he says that if i suppress AT ALL on a low dose overnight dexamethasone test, that means definitively, i don’t have cushings.  i did send him the article from some journal of endocrinology that points out that some cushings patients can still suppress.

my life is kind of crappy these days, you could say.  you could say really crappy, actually, and you’d be totally right.  i wouldn’t correct you if you said it was ultra-crappy.

maybe i should do some schadenfreude research into other sorts of brain tumors.  make myself feel better about my potential brain tumor.  because, i mean, really, except for the part where it destroys your pituitary gland’s ability to function, it’s not so bad, right? it’s small.  it’s not malignant.  they generally don’t have to crack your skull open to get it out.  best brain tumor ever, right?

except where the part where it destroys your pituitary gland’s ability to function.  i mean, i’m thinking most people with brain tumors have what, like, terrible headaches, and maybe nosebleeds, and maybe seizures and poor vision...okay that does sound unpleasant, right, but what i’m saying is at least their endocrine system can still function, right?  like there’s a zillion hormones that run your body and maybe three of mine are working right. 

i mean, i take a ton of pills.  i did before, and now i take more, because i have to take a pill 4 times a day to make my mouth salivate properly.  i have to take a pill to keep my heart from beating 120 bpm at rest and my blood pressure being through the roof.  i have to take a pill to pathetically try to convince my insulin/glucagon balance to be anywhere near normal.  i have to take a pill to sleep at night, because otherwise i will lie awake--not obsessing or anything, just awake, until 4:30 am whereupon i go to sleep for...two hours.  i may need more pills because i’m crying most of the time and when i’m not i’m super irritated by everything.  they can’t give me anything to boost my energy because that would make my heart beat even faster, and apparently no one cares that i’m never hungry because they’re like, she’s fat anyway, whatever, not like she’ll die of starvation if she doesn’t eat for a few days.  (or two months because that’s how long it’s been since i felt hungry) wait don’t forget i also have to take pills to make me poop because my digestion doesn’t work, AND pills to lower my stomach acid because that’s out of whack too.

kinda makes you wonder how many different pills they were going to prescribe me before somebody put two and two (more like ten and ten) together and said, hmm i wonder if this person doesn’t actually have a broader issue?  do you think all these symptoms that appeared at roughly the same time could possibly be related?

crazy talk.

anyhoo, i’m sure i’ll have lots to say soon about the goddamn struggle that is trying to get a diagnosis.  i may have to keep book on how long it’ll take to see an endocrinologist.  hey, i gotta make money somehow.  what do you think?  a month? two? that’s peachy, i’ll just be chilling over here, trying not to die.  that’s what i do most of the time. 

my first estimate was that i’d get scheduled for surgery in january, but i think that’s overly optimistic.  november’s pretty much over.  still gotta do some other tests, and get an mri, and pray that it shows something, and THEN get scheduled for surgery.  and if i have to wait a month to talk to an endocrinologist, well, yeah.

nobody treats brain tumors any more with the seriousness they deserve, amirite?

ooh also guess what i’m probably immunosuppressed which means if i get covid i could die!  yay! 

[take-my-revolution]

Haiku

A whole forest of

Trees blown down by the words you

Once said: "I love you".

[take-my-revolution]

Artificial sun

They gave me a bright lamp Like an artificial sun In hopes it would Shine away the real darkness

[take-my-revolution]

Bad habits

One day I fear You will quit me Cold turkey Like your other bad habits And I'll be relegated to the land Of cigarettes and fizzy drinks.

[take-my-revolution]

“POODLES”

And if I were good at jpgs I’d have that guy with the weird hair from the History Channel who always says “ALIENS”

hey creationists,

if evolution isn’t real… explain THIS

[take-my-revolution]

MY SEXUAL HISTORY DOES NOT DEFINE ME

in any way.

Experience does not equal identity.  Practice doesn’t equal identity.  The only thing that matters in constituting my identity is HOW I IDENTIFY.

So, yes, I am a real “(fill-in-the-blank)”.  You simply don’t have the power to question that.  And when or if I identify as something else, I’ll be real then, too.

#sexuality gender expression identity

[take-my-revolution]

all bodies are good bodies