The Girl Who Played Robot

Once upon a time there was a girl…

She wished she was a robot.

She wished she didn’t have any desire for love, support, or acceptance.

Sometimes she would pretend to be a robot.  She would shove people away for no reason (they didn’t do anything wrong) and turn off those pesky emotions.  Robots do not need emotions.

The whispers and hisses in her brain could be considered software malfunction.  Just ignore it.  Do a system reboot and it’ll all be okay.

Turn off that part that dwells on the past.  That nostalgia or loneliness for a particular person is nothing but a series of numbers and code.  There may be a bug in the system making her think she misses him.  But she definitely doesn’t.

The robot is thinking that the idea of starting a new committed relationship is unnecessary.  The robot does not need others.

She lets this new man attempt kissing and caressing while daydreaming about having a small metal frame and being filled with only wires.

He asks to be “committed and official” and she puzzles over what this means.  She shrugs at the request to put in on the internet (Facebook, of course).  It doesn’t much matter anyway.

She wishes the rising nausea and pain and blood pressure could be solved.  If only she could be a robot.  Then all that swirling frustrating pain would be nonexistent.

A robot would solve all these pesky problems.

She debates on pretending to be a robot.  She’s good at that.

“Brain on Fire”

The past couple weeks have been a mess.

I’ve been in the hospital (ER and admitted) twice now in a week.  This inexplicable hypertension coupled with untameable vomiting and nausea is getting worse.

Recently I picked up the book “Brain on Fire” by Susannah Cahalan.  It’s a non-fiction account of a woman’s strange experiences trying to get her unusual medical condition diagnosed.

I’m about halfway through it and it’s causing me some concern.  Now, I don’t think I have what Ms. Cahalan has.  I’m not that crazy.  But if her inexplicable seizures were replaced with my random hypertension spikes, we would have a similar illness.  Her mental-health related symptoms are slightly different, but only in how they manifest.

I wish I had access to such doctors as she did.

The most I can be thankful for is having a mother that is just as much of a warrior for me as Ms. Cahalan’s mother was for her.  I am most thankful for that.

I am however, enraged with doctors, depressed by the hopelessness of my condition seeming to be un-prognosis-able (I made a word- deal with it), and just tired.  So very tired.  The additional meds they’ve put me on just have awful side effects on top of the actual effects of my body trying to fight this mysterious condition.

So far I have the following:
-hypertension (scary-high blood pressure) that does not always respond to meds (it seems to fluctuate at random and not really in relation to what I am taking/prescribed)
-crippling migraines (they usually happen during the BP spikes)
-random bouts of nausea/vomiting that is so bad I spend hours in the bathroom
-bursts of tingling/numbness in varying extremities or somewhere on head/scalp that lasts for hours
-dizziness and lightheadness frequently throughout the day (and not necessary when the BP is at it’s highest)
-extreme insomnia
-low to nonexistence appetite (this may technically be a mental-health symptom due to my ED, but I’m not sure)
-verrrrrry slow healing and bad scarring from the simplest cuts or scratches (my mother insists this is part of my symptoms)
-constantly low potassium (even if I try to take supplements, arrange my diet to try and get extra)

And that’s not even counting any of the mental-health symptoms; which if I read into the interesting case in this book, can be coupled with physical symptoms to form a diagnosis.

I haven’t gotten far enough in the book to read about Ms. Cahalan’s actual diagnosis, but I have read articles on this case in the past.  It ends up being some lesser known autoimmune disorder.  My mother still thinks this is what I have.  I did have some blood tests show my ANA as positive (which I’m led to believe is some sort of indicator of an autoimmune problem).  But further tests were all inconclusive.

Anyway, I’m struggling.  I’m struggling a lot.  I’m feeling very lost and hopeless with these walls that keep getting thrown up regarding my health.  Even when I try to work with a plan or a doctor, it doesn’t help or another roadblock is placed in my way.

I’m wondering if perhaps it isn’t really all worth.   I wouldn’t say I’m suicidal, per se, just…tired and hopeless.  I wouldn’t say no to an “off” switch, but I don’t have the energy to create that switch on my own.

Obviously with the constant pressures of 200/150, my body is doing it for me anyway.

Hospitalized

I’m so very tired of being hospitalized every couple weeks.

This is ridiculous.

I was just released late yesterday from my fifth ER visit in less than three years.

All related to this ridiculous hypertension that does not respond to treatment.

I had a coworker drive me from work on Tuesday because I was having chest pain and my BP was 204/167.  The ER admitted immediately and did a good job to quickly rule out a heart attack or stroke.

From there, they played with the idea of a clot for awhile (blood screening showed that possibility).  But when my contrast CT scan showed nada, they sort of gave up. 

Technically they admitted me onto the floor for overnight observation, but that was only to give me a couple doses of IV blood pressure meds to bring down my points.  It did help.  The IV meds always do.  But I can’t take those at home.  The doctors ran a bunch of tests.  I was prodded, poked, pricked, etc.  I was very very disassociated pretty much the whole time.

A flicker happened when Army actually came and visited me.  We’d actually been a bit in contact via text because I just instinctively contacted him when I didn’t know how to respond to strange chest pain (I’m an idiot, I acknowledge that).

He’s never visited me in the hospital.  He stayed for a couple hours and despite sassing the nurse, it was nice.  He tried to take over for a guy who was running an EKG because he saw me immediately withdraw and disassociate when the EKG guy lifted up my hospital gown to attach the leads.  If I’d spoken up, they would have let him (he was wearing his EMT uniform), but I was too far gone by that time.

I don’t remember a lot of it.  There was a lot of pain, nausea, and dizziness. 

My father didn’t even bother visiting me.  Then he was offended when I didn’t call him first when I got my discharge paperwork.

But the doctors are still stymied.  Well.  Not stymied.  Apathetic.

Doctors: We think you perhaps just have crazy high blood pressure.

To which I (well, Charlotte) responded with annoyance:  So you’ve seen other similar cases of a female in her mid-twenties who does not smoke, take birth control, regularly exercises, has a normal BMI index, no family history of high blood pressure or heart disease, doesn’t eat fast food, is relatively good about taking her medications, be hospitalize multiple times a year for extreme hypertension crisis or related matters?

Doctors:  Uhh…well…no.  But sometimes there just isn’t an underlying cause.

Fucking doctors.

Anyway.

That’s why I’ve been quiet.  I’m discharged as of yesterday.  Feeling shitty still.

Sometimes I wonder if maybe I just wasn’t meant to live.  My body seems to be telling me that.

Ephedrine is Magic

I shouldn’t take ephedrine.

It raises my normally high blood pressure to scary amounts.

However, as Shadow Dragon has mentioned in previous posts of her’s, I have been very very sick for going on about 3 weeks now.  I’m tired of it.  I’ve missed way too much work, I haven’t been able to be social much at all, I’ve been a terrible doggy-mommy to Zoe.

It got to a point Monday where I just couldn’t handle it anymore.  Fortunately, I also saw Army on Monday and he was nice enough to give me some of his “wonder drugs” he keeps on hand.  No worries, they aren’t illegal, and they’re technically over the counter.  They’re just restricted.

Because they have ephedrine.  Which if you didn’t know, can be used to make meth.

Basically it’s Speed in simple pill form.

I took some Monday and felt fantastic.  I skipped yesterday because I don’t want to die of a stroke or kidney failure.  Then yesterday I felt awful, threw up a couple times, had a headache (and had some emotional/friends crap I soooooo didn’t need to deal with, but that’s not something I really want to talk about), so it was a disaster anyway.  So today I took another dose.

I am freakin’ Wonder Woman.  Yes. I feel like I can do fucking anything right now.  I could stop a speeding train with the flick of my wrist.

Ok, maybe not.

But I can multitask at work without dying and pretend to be friendly towards my coworkers.  And that’s a big step forward.

Ephedrine is magic.