Attempting Focus

I am scared to leave the bedroom.

I have hidden the car keys.

Slipping back into the compulsive habits of checking my hair and skin every time it feels like more than a minute has passed. (has it?)
Checking all online media and the cell phone for unknown communications. Checking the usual hiding places for blades or pills.

Habits left over from a girl who learned to survive. The others I’m sure wouldn’t call me that. I’m the part usually overlooked. Much dismissed.

I bring the clocks out and set them around the bedroom. Make sure the batteries are fresh. I can accept the lost time, but I at least want to account for it.

A good six hours gone today. Sucked into the curling smoke of nothing. In fractions and fragments. Nothing seems to be more than 30 minutes. Here and there.

I keep checking to make sure items stay in their hiding places. I keep checking the skin and taking blood pressure. So far no more than bruises and scratches. That I can handle. And the blood pressure is not ideal, but it is not hospital-level. I am determined.

Though I have just as much of a desire to stay far away from doctors while we are like this, I have no desire to put us in direct harm. I am not a suicidal part.

I remain as vigilant as I can for those that are.

-Roms

Blackouts

Having blackouts again.

Things are also quite fractured. No sense of teamwork. I’m just trying to keep somewhat focused so regular medication and hydration can happen at least.

Army visited this weekend and it’s almost entirely a blur or blank. I don’t think he’s the stress causing the blackouts and switching, but it seems to be worse around him.

At a loss for what to do. Communication is also extremely difficult. Haven’t been able to easily discuss what’s going on with any other parts.

I don’t want to talk to a professional about this. Last time the blackouts were this bad, anti-psychotic medication was prescribed (not always taken) and the possibility of hospitalization was urged. We don’t want those at all. Even though the ED becomes very bad and our blood pressure is shooting through the roof.

I’m worried it’s the nitro pills we have to take for the high BP. They’re new. Combined with the stress of this past week.

I don’t know.

I just want to try and keep things semi-coherent. But it’s hard.

I really hate losing time and being so split. It’s drastically better when we work as a team.

I’m at a loss right now. Trying not to get scared. Then I blackout even more.

-Roms

Laudanum Daydreams

These days I cannot help myself from the fantasy draw of laudanum.

I have watched From Hell a good four or five times in the past three weeks.

Read every novel I can find that involves an addiction (The Kitchen House is one I most sympathize with).

I am lost. I ache. I writhe. I am too sharp in this world and I cannot handle it well.

If only I could fade.  Even slightly.  For a time…

My doctor has recently stopped prescribing me any painkillers for the crippling side effects related to the ongoing malignant hypertension struggle.  He states that they only cause more of a yo-yo effect.  I understand where he is coming from, but the pain from this illness is so very difficult to handle with anything over the counter.

I cling to the remaining two bottles of painkillers prescribed in the past.  But I keep swearing to myself that I must save them for when the pain is bad enough to have me crying.  Which still happens too often.

I am given endless supplies of Phenergen and Ativan.

I admit to the occasional self-medicating with these.  Anything to just make it stop.

The doctor is still focused on this fantasy of getting me surgery.  But every single surgeon and anesthesiologist has refused to agree.  They say I am too high risk.

But I can’t keep living as I am.

Next month I go for an in-depth sleep study to prove the neurological and physiological effects the illness has on me, especially during the night.  We are hoping this will be hard enough evidence for some more drastic action.

Perhaps dosing me before surgery.  My doctor has theorized about this possibility.

And I daydream about laudanum.

Docs yet again

Another doctor.  Cardiologist appointment next week.

The past 10 days have been awful.

Honestly, I’ve debated on stopping taking all my meds and just letting the possible stroke/heart-attack happen that all these doctors like to use as threats.  Pretty much all of them say they think I’m not really taking all my meds anyway.

Because how could a 25 year old who is not obese and has no family history of heart or blood pressure issues possibly have malignant hypertension that resists pretty much all medications on the market?

Maybe a stroke or heart attack would actually get me to a doctor who gives a shit and stops dismissing me.

Maybe I’ll get lucky and this cardiologist (third I’ve seen in the past 2 years) will give a couple fucks.

I doubt it.

I’ll update if I’m told anything worth reporting.  Probably.

Most likely you’ll see the report on the news about me slaughtering him/her because they tried to prescribe addition hypertension-related meds and didn’t look for any underlying issue.

I’m serious, 7 different meds is enough (11 with the side effect and mental-health meds).

No more.

Time to figure out how to take meds away.

Hospital Arms

Hospital arms are pale.

Five days of the sun not kissing that skin does much.

And yet these hospital arms are still a variety of colors.

There are a smattering of purple-black bruises. And some even faded to the sickly green-yellow of age.

Most hover on the inside of this girl’s elbow

Someone who was unfamiliar with the way lab tests and IVs affect this girl would ask upsetting questions regarding illicit drug use.

They would hiss heroin.

There is the red of stress and the red of fresh pricks that sapped the girl’s life blood.
They need so many vials for tests that never show any results.

Though the tape they use to staunch the pricks doesn’t remain long, the sticky grey glue residue remains for days.

Standard soap does not help.

It is only when the girl scratches and claws at her skin desperately that stringy gray webs of the glue lift from her skin.

Five days in a hospital and these arms are covered in the evidence and signs of all that has been done to try and determine any solution.

To no avail.

There are no answers. Only ideas. Only theories. All of them whiplashes of terror-words.

Lacunar infarct
Infection
Lymphoma

MRIs and CT scans fly by and dance about but provide nothing magical.

And no surgery in sight. The idea of surgery is clamped down hard and fast. This girl is not a candidate for surgery. She is not normal. Surgery will kill her.

Yet they also say no surgery may kill her.

This girl distantly wonders what would happen if she just stopped taking the piles upon piles of meds the doctors say are barely keeping her from stroke or heart attack.

Her hospital arms tremble. They are tired. They not longer desire to push or carry or pull or reach or lift.

They are hospital arms only.

They will never be healthy arms again.

Surgery

My surgery is scheduled.  November 22nd.

Cons

1. It truly doesn’t seem far enough away.
2. They added on extra to what was initially planned, which has wrecked my psyche a bit.
3. I hate hate hate surgery.
4. And doctors
5. My surgeon is a guy. I am more uncomfortable with male doctors than anything.
6. Due to my precarious health, this surgery is going to have to be in a hospital, even though it’s normally an outpatient procedure.
7. I hate hospitals
8. It’s going to be a long recovery time: 10+ days.
9. Though I finally got through all the red tape to get off work without getting fired (my company is too small to qualify for FMLA or short-term disability), it’s going to be pretty much entirely unpaid leave.  So I have to eat that financial hit.
10. In addition, I have to pay for surgery (my insurance won’t pay even 50%- more like 30%)

    ____________________________________________

I suppose there are pros. Maybe.
Army has said he’s going to figure out how to be off work. That’s nice. All my friends are talking about bringing me ice cream and jello. Also nice. This surgery should not only solve my high blood pressure, but also possibly my migraines. That would be most excellent.

But I’m mostly just terrified.

November 22nd is not far enough away.

Hypertension Blues

Blood pressure is up again.  

193/122.

Thrown up a couple times.  Then once it settled a bit, tried all the emergency/extra meds the doctor gave me that I’m supposed to take when it goes above the danger zone.  Not helping.

I’m just really getting so very done with this whole thing.  I just want to be a normal person without these issues.  

I want to be able to make plans and hangout with people and not worry about a BP spike that causes me to be curled up in pain (or throwing up) for hours.  

I want to be able to go to work and not go to the bathroom to cry or throw up, then go back to my desk to force myself through files because I’m out of leave time.

I just want to be healthy.

I feel like I’m being punished.  Everything I try to do or change to help makes no difference.  I don’t even know what to think anymore.  I really don’t.

I’m just going to go home after work and take some sleeping pills.  I just can’t deal with this.

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.

Beyond Frustration

After my last two weird posts, I did end up going to the doctor.  He got me in quickly because he wanted to check if I had other signs of a stroke or seizure.   Apparently I did not.

After that was ruled out, he became rather apathetic about my strange symptoms.  He did some more history stuff (we talked about my psych-ward stay) and he rearranged my meds slightly again.

And then yesterday I got hit with a baaaaad migraine.  Vomiting for hours, BP of 187/125 or higher.  Finally it started coming down in the afternoon enough that I could get an anti-nausea to stay down.  Called the doctor.  He did some more med rearranging and said to call if it got dramatically worse, otherwise he’d see me Saturday.

I just feel like I’m falling into this hole again.  Unsolveable, doesn’t respond to treatment.  I know the doctor is trying but I’m just starting to feel entirely frustrated and hopeless again.  My body seems to really be sure it should have this high pressure no matter what.  I don’t understand it.  I’ve been so good now for over a month on EVERYTHING, even food.

But now I’m feeling that ED nipping at my heels and curling around my head.  Stating that I’m too fat/ugly/disgusting and that’s why I have high blood pressure.  Of course the pills aren’t working.  I just need to lose this fat.  Just stop eating and the blood pressure will drop.  It’s not hard.

My mind is messing with me a lot.  I’m aware this is damaging thinking.  Not healthy.  Not normal.  But I can’t stop.

Nothing seems to be working and I don’t know where to turn to.

Jumbled Words

I’m dealing with what I believe to be a strange side effect this morning.  Words are jumbling and not making sense. 

For example: I’m at the law firm this morning and when going over a task list with my mother (the attorney) there are a couple times I literally cannot understand what she is saying.  It’s like it’s gibberish.  And she isn’t saying any complicated law terms that I may have forgotten.  It’s like she’s just saying basic office language but my brain can’t seem to comprehend it.

It is extremely upsetting.

I can’t even get across how scary the feeling is.

I’m not sure how bad it even is.  Sometimes it seems like I have no trouble.  A couple minutes later everything seems Russian.

Have any of you heard of situation like this?  I double checked the side effects of all the meds I’m on and none of them list something like this.  I’m not sure how to handle it.

This brief post has taken me about 30 minutes with going over and changing words and making sure it makes sense.  Awful, right?  And I apologize if I missed anything that is still confusing.  I don’t seem to have as much trouble saying things as comprehending them, so I think it’s ok.

I’m really nervous but I don’t know if it’s just dumb Monday morning stuff or something to be legitimately concerned about.

Any ideas would be appreciated…

XOXO
-Pen