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Lady T. - "The Witch Is In"
12 October 2016 @ 08:36 am

I just need to lay all this out so that when I finally do lose it, people can look back and say, "Oh, well, yeah, now I get it.  It makes perfect sense, I would have gone bananas too."

Last xmas I decided in 2016 I was going to be pushy about figuring out what's wrong with me, neurologically - be my own advocate, finally get some answers.  What actually happened is I saw a lot of doctors, endured a lot of tests (some of them quite painful), endured lots of people's opinions, and was made to feel bad about myself and question my sanity while my symptoms continue to get worse, all the way here into October, where I'm hanging out with a little more information but no real explanation. And this post isn't even about all that, it's just to set the stage.

Because here's what I want you, dear reader, to understand: for every one of these appointments (and we are in the dozens - intake, test, meet to talk about it, that's typically three per doctor, not counting my regular providers, who I see on either a semi-annual basis for maintenance or as-needed for problems, and always with a follow-up) there is an average hour and a half out of my day (driving to/from, sitting in the waiting room as the clock ticks past the appointment time, sitting in the exam room waiting to actually see the doctor, and then actually seeing the doctor).  That's also an hour and a half out of my husband's day, which includes his lunch break if we were lucky enough to schedule somewhere between ten and noon so he could watch the children, unless I brought the kids WITH me (so that Wiggles can tear apart the room and scream and make the doctors look at me with annoyance or outright scold me), or unless he took the whole day off OR we recruited his parents to babysit.  Always his parents, who also watch the kids during the IEP meetings and every other kid event or crisis that comes up.  It takes a village, is what i'm saying.  Every single time.  Also, it takes a co-pay.  And usually there's some sort of insurance flub that I find out about a month later and spend hours on the phone or writing appeal letters over, but that's a WHOLE OTHER rant.

So anyway.  This is all just to give you a frame of reference for my state of mind while this OTHER medical ridiculousness unfolded.

In June of 2016 (about the time that I was nursing my son up out of a bipolar depression and getting circles of skin cut out of my leg for my birthday) I realized I'd been having a problem of, let's call it, a womanly nature.  This womanly problem had gone on for over a month and had not been resolved in the usual manner of things, so it became clear that I needed to see my womany doctor.

Unfortunately, my womanly doctor (or more accurately, her womanly minions) failed to resolve this problem over the course of three or maybe four visits (I lost count.  I think there was at least one in there where I didn't have to pay anything because it was a follow-up/call back for something they were supposed to have done earlier).

This brought us into July, when, even though I'd been swabbed and milked of all kinds of bodily fluids, I developed a raging fever from a UTI that they had not detected.

So, mid Julyish, I'm now at my GPs seeking help for the 104 degree fever.  The doctor tries to get hold of the womanly doctor minions for results of the test I'd had like a week prior so she can determine which medicine would be best suited to my particular germs, but she can't, so she prescribes a broad-spectrum antibiotic.

The fever gets better, but the womanly problem does not. Also I get a bill for testing my pee from an out-of-network lab that I have to appeal (in addition to the $11,000 bill for my skin-circles, but, remember, that's another rant).  So  I make yet ANOTHER appointment with womanly doctor (we're in August now), spend almost an hour (while Tom is home with the kids, waiting to go back to work), waiting to see someone for this problem they still haven't fixed.  And then I leave, because fuck them.  Fuck everyone.  I'll find a shaman or something.

Fast-forward about month.  We're in September.  I've attacked my womanly problems with probiotics and over-the-counter salves and Behold! They got better.  However, the cheap bottled water that I bought tastes funny.  Oh, no, wait, it's not the water.  It's my tongue that tastes funny.  Oh, ew, there's like a white coating on my tongue, with livid red spots underneath, and this taste is getting worse.  It's like licking rusty metal.  Ew.

So I go back to my GP.  It's probably thrush, I'm thinking.  Antibiotics tend to cause yeast infections (because the God of medicine hates women), and, well, there were other womanly reasons, so yeah, says the doctor, it could be thrush. I'm not going to test for that, though.  Here's some liquid anti-yeast medicine for you to drink four times a day for ten days (and some more insurance bullshit to deal with.  Lucky you!)  Also, it could be acid reflux, so take some OTC antacids.  Ok, cool.

Ten days plus some more later, I'm back at the GP saying, yeah, no, it's not all that better.  In fact, my tongue feels numb now, like when you burn your mouth on too-hot pizza?  It also kind of feels like when you suck on strong peppermints, and your mouth gets burny-numb. In fact, I've been sucking on a lot of peppermints because it's the only thing that makes me forget how awful my mouth feels. Do you think it could be related to my neuropathy (because i'd googled, and yes, that's a thing).  No reply to that, but here, we'll swab now to see if it really is thrush, I mean, I'm not sure this is the right kind of swab, but I'll ask someone, and here, while we're at it, have some presription-strength antacids. Come back in two months.

Two weeks later, I'm calling the doctor again: yeah, I'm not better.  Yes i've been taking the pills, but there's this coating on my tongue, everything tastes awful, I tried dousing it with mouthwash but it didn't go away and now I'm out of mouthwash.  Did you maybe get results from that swab? No, it's not thrush?  Could it be neuropathy? You know, like I have, and you've been helping me not find answer for? Still no reply to that, but we want you to go see a dermatologist now.  Or, no, wait, a dentist. Yeah, a dentist.

Dear reader, have you been counting along? At this point we're at the end of a chain of seven-maybe-eight doctor's appointments just for this one thing.  Not counting the other things.  Like the aforementioned unexplained neuropathy or now the lump they found in my left breast earier this month (that's one mammogram, one pre-op exam, one biopsy, and one follow-up, assuming everything turns out to be normal).  Seven-maybe-eight appointments, and now I've got to make another one to see a specialist, a derm-I-mean-a-dentist.

And then, well, insurance.  The dentist I've seen since I was a teenager doesn't take our current dental insurance, so I hop onto the insurance website to pull up dentists near me who DO, and end up with a list of one hundred doctors in Chicago, even though it says "Near Newark Delaware" right at the top and, yeah, that's about when I had my nervous breakdown and posted pictures of spotty tongues on facebook.  Let's roll past that.

Cuz the story's not done, see.  I spent ten minutes on hold to the one practice in Newark who employs like twenty dentists  - do you see what's happening here, America? McDoctors offices gobble up all the providers and then you can't get service because one office houses twenty dentists to serve an entire city.  No wonder I was on hold for fifteen minutes... fuck them.  Fuck everyone.  I'll just live with pizza-burn tongue.  With my shaman doctor.  In my backyard.  Growing our own corn.

But no.  What I did was google "what kind of doctor should i see for my tongue", and then googled "ENT and tongue" (because it's "Ear Nose and Throat", not "Ear Nose Throat and Tongue", but yes, ENTs will treat tongues, and I HAVE one of those.  So I made an appointment with my ENT - well not my ENT, because McPractice has like ten ENTs but mine is on vacation, but I don't want to wait until he comes back because now it's been two months without relief, so fine, I'll take whoever is open, even though that means I can never go back to my previous ENT because that makes perfect sense? Fine. Whatever, just fix me.  I have Tom come watch the kids and go see my brand new ENT (appointment # eight-maybe-nine), and here's what he tells me:

You have "coated tongue".   It's totally a thing, though not really, because we don't know what causes it, except that antibiotics often cause it.  There's no treatment.  It goes away on its own.  Usually a lot faster than this, but you've been using a lot of mouthwash and sucking peppermints, and those can irritate it and make it worse.  Oh not a lot of mouthwash and just mild peppermints from the candy aisle? Still.  Stop doing that.  Go home, do nothing, read about it on google but don't take any advice from google. don't try to make it feel better, and maybe it'll get better.  If not, come back in two months, because it might also be a nerve thing (note that I didn't mention the neuropathy).  It might also actually be thrush, but since they checked for that, meh, it's coated tongue.  That'll be $25 please.

So yeah, this is how I spent a quarter of my year.  It's my life in a nutshell, because everything is like this, really.  A big complicated chain of ridiculousness that gets me nowhere but worse than I started, waiting for something to get better.  Maybe.

On the bright side, two months without mouthwash and peppermints will put me in mid-December, exactly one year from when I decided this year would be the year I solve my medical problems.

Maybe 2017 will be the year of Fuck It.  I'mma just wear a tinfoil hat and hope for the best.
Lady T. - "The Witch Is In"
28 April 2016 @ 08:20 am
I want to update and explain.  Archive where we are now so when I write about it someday it's here, fresh, to remind me.
But I'm so fucking tired.
He's not good.  At home's he's my boy, frustrating at times but charming, sweet, earnest.  I put him on a bus and make a stab at the day and then the phone calls come.  He trudges back in the house deflated, sullen, folders stuffed with notes about what happened, what he did or refused to do.  What they had to do to keep him safe.
He tears apart rooms.  Flips desks.  Runs away.  Terrorizes his friends.  Goes after women with angry hands.  Snores at his desk, lies down on mats, tells them he'd rather live where there are no people, or not live at all.
Yesterday we had to bring him home, because apparently now he has a speficic plan for how he'd do it.  That's a different checkbox on the paper work, a tick towards urgency that doesn't actually change how they service him, just how I feel, hearing about it, a little pocketknife in a mother's heart.
"Why did you say that?" I ask him at the Chick-fil-A that night.  His father takes us all out for something easy, something nice.  Mouthful of fried chicken and ketchup, I'm hoping he'll say "because someone put the words in my mouth," someone gave him the idea, but instead it's "because then I wouldn't have to be angry anymore."
I can't breathe.  I'm choking on grief as I type this.  My house is littered with toys and papers and I can't find anything I need, used dishes in the sink, my hair unwashed, I can barely move through my day.  It's all so dirty and heavy and exhausting.
We've been holding our breath since the fall, our one meeting with the lawyers.  Now they won't answer my questions.  How do you shrug off a mother whose nine-year-old wants to die?
The doctors, the fancy ones that the district paid for, tell us our son is unwell.  Well, that's swell.  Now what?
Now what.
Lady T. - "The Witch Is In"
07 April 2016 @ 08:46 am
It's been several months since I turned in a story to my critique group, so I decided that my writing goal for this week would be to complete a draft of something - I've got three stories I could conceivably wrap up and pitch for feedback.  But nothing's bubbling.  I'm hitting a road block.  I know, big surprise.

I checked my files and realize that the last story I completed (other than flash fiction) was in 2013, before I found out I was pregnant. Sure, having a baby is an excuse, but come on, three years?? What the hell, Lady?

This is not to say I haven't been writing.  Flash is something.  Lots of poems.  Content writing I got paid for.  Those three unfinished shorts have over fifty pages between them, plus I added several chapters to a novel-in-progress and did revisions on existing stories as I continue trying to find homes for them.  All told that's pretty good for me, given how little writing time I actually have.  I've been working.

Still, three years without a finished story is enough to make a girl wonder.  Am I kidding myself, with this author business? I mean, it's all I've ever wanted to do, and I feel like I'd die if I weren't trying, and I've earned enough almost-awards and acceptances to say with reasonable confidence that I don't suck as a writer, but Jeebus Crisp, Lady, three fucking years? At this stage it really shouldn't be so hard.

I realize it's psychological.  I realize that my muse is still bruised by the resounding non-response to my novel (after all those years and all those tears), and that rejection after rejection for my short story babies doesn't help, but, really, girlie needs to get over that.  The only way to move on is to write more, write more, and I'm trying, so why the hell is it so fucking hard?

Coming up with ideas is hard.  My ex-best friend with her idea-a-minute merry-go-round mind.  Fuck her and all the bunny writers out there, I'm happy with just a handful, but even that is a struggle.  I have three - THREE - to show for three years, and, really, one of those is just a half-idea.  More like a couple of character sketches, a setting, and a monster (no wonder the story isn't moving, right?).  The other two are dream-spawn (where would I be without dreams??), but they're dead in the water because dreams don't usually translate to fiction without a lot of elbow grease - you've got to fill in the gaps.  Apparently I can't fill in the gaps.

So here I am, bitching in my journal processing the problem and not actually writing anything, and the seconds of my sliver of writing time speed by.  Wiggles is stirring in her crib.  We have a doctor's appointment in an hour.  I have to change the cat litter.  I don't see this turning into a draft of anything but more disappointment.  So maybe it's not just psychological, after all.  Maybe I'm just meant to be doing something else, and all this ado is wasted time.

Either way, something has got to change.
Current Mood: bummed
Lady T. - "The Witch Is In"
01 April 2016 @ 10:53 am

There were two letters waiting for me when we got home yesterday.  One was a second notice from the State of Delaware Dept. Industrial Affairs, telling me that my former employers would not be held liable for discrimination because 1) they only employe two people, which isn't enough for discrimination to count, and, anyway, 2) since my job was not the same job as the other employee (How could it be, with only two people??) they can't make a legal parallel to show I was discriminated against.

The other letter was from the hospital's Patient Relations department denying my request to have Wiggles' Emergency Room visit re-coded so that our insurance company would cover it - even though the doctors who treated her used a different code which IS covered.  No explanation for why the request was denied, why one code is better than the other, just basically, sorry, and fuck you, pay us $900.00 because we said so, that's why.

Neither of these letters was new news.  They were just reminders, as if the Universe wanted me to be extra-aware of how unfair things are in order to prepare me for more unfairness yet to come.  Because, really, why should I ever have thought the universe was fair?

This has been the nature of my faith for going on a decade now - while I believe in God or forces that can save you or sway you, the extent of Her/Their inclination to do so is unpredictable and inexplicable, leaving us, for all intents and purposes, at the mercy of chance.  The free will of mankind is a blessed and ugly thing.  Young girls are raped and sold into slavery.  Mountains crumble, burying shanty towns.  Teenagers get killed by drunk drivers.  Small town non-profits are run by the whim of volunteers; devoted bookkeepers get ousted by minor shifts in power, petty little people driven by grudges and self-interest.  Babies swallow nails, or don't. Single-income families get stuck with huge bills because hospital coding queens protect their mistakes like precious eggs. Life's a bitch.

My mind is not a pretty place these days.  Like the God-King said this morning, "I really need something good to happen."


The Kinglet just finished three days of intensive testing for his case against the school district.  The testing all took place in Pennsylvania, about an hour from home.  The God-King took off of work so I wouldn't have to navigate and deal with both kids on my own, and we took Wiggles so as to not burden his parents with three more days of babysitting - they've already watched her through all my doctor's appointments, of which I have at least two more upcoming, plus the inevitable IEP meetings that will follow the evals.  So we made it a family event, driving up together all three days.  It was exhausting.

I had to bring copies of the report from the Kinglet's last medical eval, the one from the children's hospital when he got the Autism dx.  Reading through it, I was struck by how little has changed in two and a half years.  Then, too, he barely made it through all the interviews; he threw temper tantrums, became non-responsive.  I had to sit with him on the couch to keep him calm and focused, and even still the doctors had to cherry-pick which tests to use because he just couldn't tolerate the whole battery.

It will be many weeks until we have the official reports in hand, but after speaking with the doctors afterward (and given my current existential crises) I'm not hopeful for the outcome.  Their consensus is that my son has signficant mental health issues - well, no kidding.  One will likely recommend that we focus on that rather than any academic concerns, which is the opposite of what we're asking.  The other was pushing for us to get him a new psychiatrist, I guess? It was a strange and upsetting encounter and i'm not entirely sure what to take away from it.  I told her we have, literally, the only child psychiatrist left in our area.  We've either seen everyone or been turned away because no one else is taking patients.  But I'm supposed to supply her with a list of providers in our network so she can tell me whether or not she knows them - I'm confused as to how, even if any of them are taking clients now, it would benefit us to switch to one of them (all of whom are in Wilmington), when the doctor we have has been working with the Kinglet for two and a half years, has gotten to know his issues and his reactions to meds, and is located just five minutes from our house.

So I don't know.  We were really hoping these specialists would have some amazing insight into what will really, truly, finally help the Kinglet, but my fear is that they'll just rehash what we already know.  They might even make things worse.  The argument that he's so depressed or disturbed that he doesn't need level-appropriate academics is bone-headed.  His issues are going to be there whether you offer him basic common core math (repeated over and over and over until he wants to kill himself from boredom) or slightly accelerated math, which at least offers some stimulation and a sense of specialness and puts him on a career path.  Access to enrichment programming gives him access to other gifted children, their influence and society.  Denying it makes him feel like he's not good enough, and leaves him in the company of other autistic children, which teaches him how to be autistic.  There's absolutely no reason we can't attend to his mental health AND his mind.  I mean, what the fuck, people.

But given the recent lack of justice in my world, I'm afraid the people with the power to influence my son's future won't see it that way, and won't have anything to offer.

Current Mood: defeatist
Lady T. - "The Witch Is In"
09 February 2016 @ 08:13 am
When life gets overwhelming, you can taste it in my food.  It's rushed, sloppy.  Boring.
I'm happy when I have time to try new recipes, pace things so they're done on time, do them right.
Time being relative, of course.  Time being a mindset.

On Sunday I made some tenderloin steaks in my new stainless steel pan, and they came out beautifully.  Exactly the kind of sear I was hoping to see when I moved away from teflon.  I was even able to make a proper sauce from the fond for, like, the first time ever.  It wasn't a particularly good sauce, but it was quite lovely.

I also braised some cabbage in apple cider vinegar, another first.  Unfortunately the Godking didn't love that one, so I have to find another liquid to try, but I like having a way to make it other than fried (don't get me wrong - Alton's fried cabbage is amazing. Just, you know, variety.)

Last night I made pan-fried pork chops, which came out perfect because I gave them enough time to rest in the batter before cooking them.  I also let the pan get hot enough, fried them 2-3 at a time instead of crowding them, and I monitored the temperature with two meat thermometers (since one by itself is likely to lie to me).  Then I let them drain for a bit and kept them warm in the overn until everything was ready to serve, the result being perfectly browned and crunchy chops with tender insides.  The extra time in the oven allowed my roasted potatoes to develop a perfect crunchy skin, too - Tom missed out on those because he's avoid skins right now, sigh, but ah well.  I know I did good. Served it all up with some sauteed veggies - frozen, but since I fully carmelized the onion first and browned the heck out of them in my stainless, they came out nice.  Even tossed mine with a dash of sesame oil, which is my new favorite thing ever.

Was also able to wash dishes while I go, and last night Tom washed most of what I couldn't get to after (while I gave Wiggles a bath), so my kitchen isn't totally trashed.  Always a good way to start a day.  And tonight I don't have to cook, because thankfully there are enough for leftovers, even though I personally ate two chops.  Good times.

It's the little things.

I got a lot done yesterday, too, which really helps.  I'd be feeling even better if I got some exercise in, but today I did a little stretching before breakfast.  If I can just nudge myself into getting away from the laptop enough during the day, without feeling like I'm falling too far behind...

We're going to order a cheap-o elliptical machine.  Just something to give me an opportunity for cardio during the day, maybe 10-15 minutes in between tasks, at first, or after lunch. Something that I can stash when I'm not using it so it doesn't become a secondary closet or a child trap.  I think anything at this point would be helpful. Hopefully the thing won't break after a few tries.

I am so far off the path of fitness, but given the health issues I'm looking at, I've got to change the paradigm.
Little things.

I brought my old altar out of the basement, where it's been since we moved into this house.  Never was able to find a spot for it, so it got shoved against a wall and collected dust.  I'm amazed it didn't suffer any water damage from the various floods.  But I spent a Saturday (now that I have free Saturdays!) organizing down there after the Godking built me some shelves for all the bins, and I saw it there and thought, I need to do something with this or put it out of its misery.  So I brought it up, cleaned it off, and spent another Saturday rearranging furniture until it had a place - front and center at the big study window.  Tom bought me some double-sided tape to secure the marble top (so the baby doesn't pull it over on herself).  I put a single silver candlestick in the center - the one shaped like a witch/crone - with a black candle.  This is me clearing my throat: a little nudge in, maybe, a magical direction.

Did a little meditation out there after my stretching, watching the candle and the snow falling behind her.  Then came out here to share some thoughts over breakfast.

Like I said.  Little things.
Lady T. - "The Witch Is In"
28 January 2016 @ 11:03 am
Ugh, the only writing day (half-day) I had this week, wasted.  Half the rest of the world's fault, half because I can't get out of my head.
Well if I'm not getting any work done, might as well come here and kvetch.

There are times when I'm in a bad mood but I know it will pass, and there are times when I feel the floor buckling and know the bottom is about to drop out on my mental health.  This is one of the latter.  It's like, I don't know, a switch goes off, things start to shut down, a shutter closes on parts of my brain that usually keep me going.

I can rattle off all the reasons why, this time, but what does it really matter.


I did have something interesting to share, though.  Might as well mention, since I'm here.

A couple of weeks ago I felt a presence come to me as I was doing my before-sleep meditation.  Can't describe it better than that, just - an awareness of something that wasn't me, coming in where it hadn't been a moment before.

But that's not the most interesting part: when I felt it, I recognized it.  I don't know *what* it was, but I knew it.  It was something I'd known when I was a child; something familiar and welcome.  I'd forgotten all about it, but then all of a sudden there it was again.

I think it actually came two nights in a row, though I might be misremembering that.  It hasn't been back since, though I've been hoping it would come.  I've been struggling to put a name to it - like I feel it's on the tip of my tongue.  But I can't remember.

I wonder if it has anything to do with the presence that "goosed" me in my son's room a few weeks ago, when I was making his bed.

There were presences in this house when I was little.  Not scary ones, for the most part.  Could it be one of them, come back now that there's another baby in the house? Maybe that's who she was waving to last night, while snuggling in our room.

I wish I knew more.  I wish it would come back.  I hate feeling so disconnected.  My awareness of the spiritual realm has been numbed and dull for so long.  I don't know if it's the medications, or if I've strayed too far from that path, or if I'm just old.  I feel like the lustre has all rubbed off of my soul.
Current Mood: dull
Lady T. - "The Witch Is In"
21 January 2016 @ 09:42 am
I got bullied all the time in grade school - like, literally, every day.  Most of it is just a blur now. But certain incidents stay with me.  Like this one time, in sixth grade, when the social studies teacher had to leave the room.  Twenty-some twelve-year-olds left unsupervised.

There were two boys in my class who'd made it their mission to torture me that year.  It was a sport to them.  Jolly good fun.  Sure enough, as soon as the door closed, they started on me.  I can't remember what they said; fat jokes are interchangeable.  But I remember they started throwing things -- spit balls, wadded-up up paper, pencils -- along with the fat names.  It was, well, particularly awful.

But what makes this one event stand out is the fact that the whole class was witness to it, and no one did anything.  A few joined in, but most just sat there, waiting in silence for the teacher to come back.  Those were the ones that hurt me most.

There was a little girl who sat next to me, someone who was nominally my friend.  Which is to say, we talked sometimes, we made each other laugh.  She was never mean to me.  But she didn't stick up for me, either.  I was crying. I turned to look at her.  She put her head down.

Eventually, the teacher came back.  Life moved on.

This is how I learned what people are like.  Some are awful and cruel, but the vast majority are just passive.  Nice enough to your face, but not brave enough to stand up for you.  Not moved enough to even be there for you when shit comes flying at your head.

In time I learned to stand up for myself.  I don't need heroes.  But even knowing what I know, I never managed to grow my skin thick enough not to be hurt when it happens again.

I have a lot of colleagues who are involved with the Arts Alliance; writers who come to the open mic or the literary events that I helped make a reality.  A lot of people.

A few of them approached me after I left to find out what happened.  To ask how I am.  A couple expressed qualms about going back.

I don't want people not to go.  I'm proud of those events.  I'm proud that these opportunities are available to writers in my hometown, that the community here is thriving, and that I had a significant role in it.

But it would have been nice if the community of people I respect and enjoy and help to champion had wondered why I was willing to walk away from it.

One person has been talking to me about it, and for that I am grateful.  It helps to put words to things.  I said something to her that really summed it up: something really bad happened to me, but almost no one acknowledges it.

It's like they're all putting their heads down, pretending they don't see.

I had a meeting with my critique group last night, people involved in this circle, who I haven't seen since before I resigned.  People aware of what I'm going through because of what I mention on social media.  People who haven't asked.

I didn't bring it up.  I smiled and focused on our mutual business. Life goes on.

But one of them, my nominal friend, was wearing an Arts Alliance t-shirt.

I don't *think* it was an intentional slight.  I think it was just a really unfortunate coincidence that she picked that shirt out of her closet to wear that day.

But it does say something, all the same.

Like everything else, I'm going to have to learn to get over this.  I have to get over myself.  I know what I accomplished, I know that what was done to me was wrong, I know that I responded in the right way for myself, my family, for principle.  I know that whatever ripples come from this will serve their purpose, that I will be wiser and stronger, and that there are new and better experiences waiting for me.
Just typing this helps.  It's part of the process.  To say, even if no one is listening, this is how it is -
and it totally fucking hurts.
Current Mood: lonelylonely
Lady T. - "The Witch Is In"
06 January 2016 @ 01:21 pm
In other news, I'm worried that I have MS. Or something like it.
For a very long time now I've had all these crazy things wrong with me.  Some are chronic, some come and go.  Some can maybe be explained, many can't.  But if you look at the list of symptoms for MS, they're pretty much all there.
Trouble is, my neurologist doesn't seem to take me very seriously anymore.  We did a few tests when I first started seeing him for my daily headahces six (?) years ago, we tried all these different meds, but now it's pretty much a stack of prescriptions and facetime every three months.  I've mentioned the things that concern me, but he's mostly dismissive.  Sent me for a sleep test for the aphasia (forgetting common words, like "spatula", or mixing the syllables of words, like "bood goy" instead of "good boy") on the grounds that maybe I'm not getting enough sleep - but since he's the head of the sleep clinic is it really any surprise? But it's more like "Doctor, there are times when my vision gets blurry and I can't see, or it seems like the lights are dimming around me when they aren't" - well, I'm getting up there in age, he says.  Or, "Doctor, when I hold my hand in this position my arm shakes and I can't hold my fork". - well, don't hold your hand in that position.  I think he thinks I'm a slightly hysterical nearly-middle-aged woman who needs to lose weight and stop looking up symptoms on the internet.  And maybe he's right! But on the other hand: aphasia.  vision problems.  hearing problems.  numb hands and feet.  tingling and itching for no reason.  incontinence, weakness, headaches. balance issues.  I'm mean, look it up.
I had EMT (EMG?) tests done in 2010 and 2012 (because I was dropping things back then, too).  They showed mild neuropahty and left open a lot of questions that weren't really pursued.  I want to be tested again, and I want someone to take me seriously and say, No, it really doesn't look like you have MS or anything else... or, maybe you do.  Because if I DO, I want to know now, so they can treat it early.  I have little kids for fuck's sake.  Sometimes I wish something irrefutable would happen, like I suddenly wouldn't be able to move my arm or something, so they'd take notice.  But something like that would mean the disease was further along, and it's not like I want that.  Or maybe I don't have it all, so I'm sitting here wishing it on myself? But then my foot goes numb for a few days again, or I try to speak and can't get words out, and I get worried all over again.  I'm not making this shit up.
I've been asking, but he's been glossing over it.  And I've let him, because what do I know.  But in the back of my mind, there's the knowledge that, in many cases, we know more than our doctors do.  There's the memory of the (woman) doctor who told me to my face that I don't have endometriosis when I fucking did - and I KNEW I did.
So I've been trying to figure out what to do.  Last night I had a dream that I was at the hospital for something and they did the nerve test again, and I was so relieved.  Then today I was looking at facebook after my appointment down town, feeling good about standing up for myself, and I came across yet another article discussing the gross underdiagnosis of women with medical conditions because a) women are taught not to stick up for themselves and b) doctors are used to thinking women are complainers, malingerers, mentally ill.  So it got me fired up to do SOMETHING... I looked up the name and number of the doctor who did those tests on me, hoping maybe I could go to her directly and ask about my concerns.  She was nice, I remember that.  Only she doesn't take patients directly.  I have to get referred.  So that puts me back to the same place - ask my neurologist who doesn't give a fuck, or ask my general practictioner who doesn't really give a fuck either, and knows less.
So I called the family doctor - I guess to schedule a consultation? I mean, is that what you do? Schedule a time to sit down and say "Doctor I'm afraid I might have MS will you please forget about the physical therapy and the anti-itch cream and send me to someone who can help me?" But they're out to lunch, so.  I guess I'll... call back?
Ugh.  I mean, what the fuck, Universe.  Throw me a bone here?
Lady T. - "The Witch Is In"
24 December 2015 @ 05:12 pm

Last night I dreamed of a woman who committed suicide.
There was a voice over, references to a poem or an excerpt from a book.  Something about a river.  Virginia Woolf, maybe.
She did it in a large, tall, glass tank - like what you'd expect to see in an aquarium, or a mad scientists lab.  Like the glass jar my mother used to use to store her cotton balls.
    Like what you might use to kill an insect with a cotton ball soaked in acetate - to keep it whole, for pinning.  After you watch it die.
Anyway, she did that, drowning herself in a giant glass jar, held down under a weight (like what stylists use at the salon? to sterlize their tools? There's a thing that floats in there, at the top - under that, maybe.)
Only she changed her mind, as she was drowning.  But she had put in measures against that, of course.  She hadn't left herself a choice.  So she died anyway, and you could see it - you, me.  The dreamer - the change of expressions across her face.  The realization that this was it.
Only she DID have a choice.  She fought, in the end.  She struggled, and she died with the echo of it on her face, and her arms stretched out in a fighting stance, pushing against the glass.  She did this, knowing she would lose, but wanting her family to know, when they found her, that she knew she'd made a mistake.  She made her body her suicide note - I'm sorry.  This was wrong.  I'm sorry.  I love you.  I tried.
I forgot about this dream.  I woke up remembering the one about the flood - of course, the flood.  Because water = emotion.  And this was a tsumami, to be exact; crashing over houses, drowning children; houses that were also bureaus, me searching through drawers for children that were also my daughter's toys.  Plastic ponies and motionless little people.  And weirdly (and this is the only thing that makes me wonder), a plastic toy mother was calling out for her missing toy son - Johnny Mac! Johnny Mac, where are you? Johnny Mac being the name of a character in one of my stories, a young man who died in Vietnam.  Now why would THAT be the thing I take into my waking day??

But I was reminded of it because I sent Tom out with the kids to the family party without me. I had planned to go up until the very last moment, but it was so hot and sticky, and our clothes are all over the floor because the laundry never got put up, because I've been running so hard doing All of the Things getting ready for Xmas, because I've been working so hard and I'm so tired, because I'm so beat down over everything that has happened, because, really, I feel unwanted.  I don't know why I can be turned over so easily, by employers, by best friends.  I must be ugly - yes that's it.  Nothing fits, nothing looks right, I'm fat and ugly and unwanted, and I have nothing to wear.
Of course I don't really believe that is true - unfortunately the laundry thing is very true and I honestly could not find anything to put on.  At least, I could not find anything to put on that made me feel comfortable enough and, therefore, strong enough to be with people and pretendl like my heart isn't breaking,
But it is breaking.  It hurts.  It hurts.
So I started sorting laundry and I sent Tom and the children away, and it occured to me, as he closed the door behind them - if something happens to me tonight... if anything happens to me tonight that isn't irefutably an accident, they will think I did it to myself.

And then I remembered the woman in my dream.

What was she trying to tell me, I wonder?  Not to give up? Because I don't plan to.  I'm not that girl anymore.
But, still.

but still.

Lady T. - "The Witch Is In"
04 November 2015 @ 03:19 pm