News (From Jesse)

Yesterday I had to call an ambulance, she is again in the hospital. She has been having trouble breathing for the last few days the last 2 being progressively worse. They are not sure but think she could have a blood clot in her lungs. Problem is the biopsy area had been bleeding internally so her red blood cell count was really low.

A transfusion later, she is loopy and sleepy but resting in the hospital bed. They had to reverse the blood thinner to wait and see if the biopsy site is still bleeding. When that is done they will take a closer look at her lung.

There is more to it all, but I will be brief. She has been really freaking out thinking her symptoms were psychosomatic. Her anxiety has been giving her issues but the blood loss made it worse. So she is being given medicine to help calm her.

That is the extent of what I know and her or I will make another update when something changes.

On the lighter side

JESSE: Would you like some saurkraut with dinner?

ME: Sure! Just remember that a little bit of sauerkraut goes a long way.

JESSE: This stuff is special. It's from Bavaria. You want to know what's awesome about Bavaria?

ME: Uhhhm, it's a country???


JESSE: *hands me a plate with some food on it*

ME: Thank you! *peers at plate* Hey, this plate has a really pretty pattern to it.

JESSE: It's one of the nicer ones I used to have, yep.

ME: Well, there's a sign that you're growing up. Someone makes you food and you are compelled to compliment the cutlery.

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Tetris and Jenga

I got a look at my medical records a couple of days ago. Upon admittance to the emergency room, my blood pressure numbers read: 207/113. The doctors and nurses were aghast and dismayed that I had somehow put myself through DAYS of those numbers before I sought medical help.

I'm beginning to finally realize those numbers mean something, and that if every doctor and nurse looks at those numbers and then sputters, it's probably a bad thing.

I don't know if I was as close to death as I could have been. My chart did read that there was worry about "AHF", or "Acute Heart Failure". One by one, each of these things wouldn't mean terribly much.

Put them all together? Well, my generally well-stacked life of Tetris suddenly becomes a seven story game of Jenga - and I've always had shaky hands.

I have had two states of being over the last week. Two and only two.Subtlety is not the name of this game.Collapse )

I suppose writing about all this medical bullshit isn't a bad thing. It's a day by day account of my stability, medications, new symptoms, etc. All things nurses and doctors like to have on hand about their patients.

We still can't get my blood pressure reading down further than 160, but it's a hell of a lot better than 207. But I'm hopeful. The meds, my relative youth, and a stubbornness that wouldn't let me die even I decided to stick my head a into a bag of methane....

Well, what else is there to do, except live until you don't? Cest la vie.

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Soothing baths and soccer balls

I have developed the most bizarre aversion. Laying down makes me panic and hyperventilate. Not in the whole "If I lay me down to sleep, I pray the Lord my soul to keep" kind of way. (Because, seriously, if getting in and out of bed is what does me in, giving up the ghost is probably a good idea anyways.)

Jesse says it's likely a trigger to the episode I had in the hospital, the one where I couldn't breathe and was inconsolably hysterical. It makes sense. I am trying to stack my pillows high, as laying down at an angle isn't quite so scary, and I am also trying meditation and breathing exercises. It still takes several minutes to drag my heart rate down into anything resembling a normal breath.

I had no idea that a person could be scared of breathing.

Jesse suggested I put in a call to Dr. Cannon about getting a stop-gap, as-needed anti-anxiety med. That's probably not a bad idea. I just hate calling doctors and asking for new medications. There's a part of me that is, was, and will forever be paranoid about being labeled a "drug seeker." (Even though logically, no doctor could truly diagnose me as 'drug seeking' because I haven't SEEN a doctor in 20 years in order TO be diagnosed. Still, the worry is there.)

I am on a very low dose of Clonodine (.1 milligrams), which is a beta blocker, I believe. (And different from its oft used cousin, Klonapin.) It lowers the heart rate and is calming. But I can only use that when I wake up and when I go to bed. I do not want to have to mess with an anxiety med that's a sedative, either. I'd way prefer the beta blocker, but I'd also prefer one that didn't risk dropping my heart too low. So we will see.

Argh, this is maintenance writing. I was up at 3:30 AM - and have been waking up at 3 AM for days now. At least I get to see the sunrise. I'm hoping to get back to work this week. They are holding my job for me, but I'm still nervous. It would be just my luck to get a job with health insurance just in the nick of time to keep my kidneys from exploding, and then lose the job that gave me the insurance to treat my explodey kidneys to START with.

Jesse had a hilarious misheard phrase yesterday. I can't remember what I was talking about, but he turned around, tilted his head and said "Existential exhaustion? Is that what you said?"

That was not what I said, but it was incredibly apt. We both had a great laugh about it.

Made the mistake of taking a super hot, super long bath last night. Not only did it wind up giving me a headache, but it made the muscles I was trying to relax tighten up even more. Once I felt my heart rate pounding, forcing the breath out of my lungs in ragged gasps, I figured it was time to get out. Took another few minutes to literally crawl out of the tub and then I had to call to Jesse to dry me off.

You guys are giving me incredible support and information. And god, do I need it. In the hospital, it was easy enough to walk that fine line and feel better. Armies of doctors, nurses, professionals, etc, who were trained for this. OUT of the hospital? Much, much harder. It's playing this stupid game where the slightest move left or right plunges me into some kind of unpleasant consequence.

Take warm baths to soothe the swollen muscles of edema - but not TOO hot. Eat some sodium and protein to settle your meds - but not TOO much sodium and protein. You can totally have sugar, as you're not diabetic, but all of your favorite treats includes shittons of dairy. Get out of bed and walk around, do some physical things to help ease the edema, but for God's sake, do NOT expend so many spoons that you wind up nearly passing out or crashing entirely.

Jesse has taken the brunt of my immediate care. He has been the one researching, digging out the do's and don'ts, all of the meal preparation and cooking. I need to step up to the plate and begin being my own advocate. It's not fair to place all of this on Jesse's shoulders.

So with the resources you guys are giving me (and YES, Michael! When she's up for it, I would LOVE to email her about her experience!), it's giving me a jumping off point in learning how to care for myself.

Speaking of edema, I cannot believe how much weight and pressure I've put on. Damn near 30 FREAKING POUNDS in the last month. I'm on diuretics, drinking water, and they say it'll take a few weeks to go away. At one point, my face was so swollen I barely recognized myself. It felt as if someone had replaced my head with a soccer ball and glued googly-eyes onto it.

I look and feel extremely pregnant. When I go out, I get knowing smiles from other women. That is, I suppose, nice, but it's a good thing they can't read my mind, because it's going "HOW DO WOMEN DO THIS FOR 9 MONTHS?!" Seriously, every movement is impeded and I marvel that the human race continues to breed at all. I'm pretty sure I'd just have belly dived down the stairs at this point.

Aaaaand thoughts like that are the reason I don't have children.

It's nearly 7:30 AM. Maybe I can go back to sleep now. I've got to get my schedule wrapped back around my work hours, lest I make for myself an even more miserable time later.

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Potty humor is fucking hilarious!

Summer used to be my favorite season. Even in Arizona, where the sun literally liquefied the asphalt on the road, I was madly in love with summer. Moving to the Midwest, where they actually HAVE seasons (other than just "hot" and "holy shit my face is on fire") summer still remained my favorite season. I donned every combination of Daisy Duke shorts and ridiculously tiny tank tops I could find. I loved the oppressive, inescapable press of the heat. I felt the natural, spiraling power of Nature as she raced upwards. If it got really hot for a week or two, well, that was okay, too. It WAS summer, after all.

And then one summer, it got really hot for three weeks. And then the next summer, it got really hot for a whole month. And now there is this summer, which is the hottest summer on record, because EVERY YEAR is now the hottest on record.

Summer is just not fun anymore.

It makes me wonder how on earth I managed to do half the shit I did as a teenager. I walked 10 miles barefoot on the desert highway. Not because I couldn't afford shoes, not because I was fleeing an unsafe situation. I just decided to take a ten mile walk on streets were puddling from asphalt to tar. I think I was trying to prove something. It apparently wasn't all that significant, as I don't remember what I was trying to prove.

I wonder how on earth I managed to dress in black long sleeves for most of my adolescence. And yes, I know the Bedouins wear black as well, but they have flowing black garb, whereas I covered every inch of ripped up lace, leather, and skirt in heavy jewelry.

But then, teenagers are teenagers. When you're aiming for a specific image, practicality goes right out the window. I'm glad to be well past that age. Black lipstick looks ridiculous on anyone over the age of 16 and besides, black clothing collects waaaaay too much cat hair to wear as fashion standard.

On news of the sick and not-dying: I need your guy's help with food. Recipes. I've got me a new renal diet. (AHAHAHA "RENAL" SOUNDS LIKE ANAL AHAHAHA!).

Franklanguage, it occured to me the other day that vegan food is a good place to look for non-dairy, low sodium stuff. What do you do for your diet??

The strangest, most surprising aspect of this is finding out I need emotional support on how to adjust to a new diet.

I swing from elation at being able to try new foods and then crash into outright hostility about being limited. Food is way more emotionally complicated than I'd given it credit for. I was like - "Cut down on salt? Sure! No biggie! Cut down on potassium and phosphate? Well, I guess I don't eat a whole lot of bananas anyways. WAIT A MINUTE I HAVE TO RESTRICT DAIRY AS WELL?! WHAT KIND OF WORLD IS THIS?!"

And then someone reminds me that this is my world and if I don't start treating it with respect, I'm gonna lose it. And by "lose it" I mean die.

So let's not die.

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I do not control Time

I miss the sunrise. Work and necessity has taken me away from my morning hours. Those moments that slide nearly unnoticed over the horizon, making the colors shift so subtly that one can barely remember when it was black, dusky purple, or cerulean.

After the schedule destroying hospital stay, I'm up before the sunrise. I will watch it with joy.

Things, of which seem never ending:

* I have chronic kidney disease. I was like, "What's the chronic part mean?" Chronic means incurable. I have some kind of kidney disease.

* And it will never, ever be cured. I can quell the COPD thing (OOOOH BOY HOWDIE HOW SMOKING IS NOT FUCKING ATTRACTIVE ANYMORE), I can eat better (OOOOH BOY HOWDIE HOW THAT'S AN ENTIRE POST ON ITS OWN), but I will never, never be without badly damaged lungs and a limping kidney.

*I thought I was not afraid of doctors. I was wrong.Collapse )I have to be okay with time being its own master. I have to be okay with how short a thing it is, that we could live it so long and yet not understand it. I have to learn how to be okay with this.

""Because we don't know when we will die, we get to think of life as an inexhaustible well. Yet everything happens a certain number of times, and a very small number, really.

How many more times will you remember a certain afternoon of your childhood, some afternoon that's so deeply a part of your being that you can't even conceive of your life without it? Perhaps four or five time more. Perhaps not even that.

How many times will you watch the full moon rise? Perhaps twenty. And yet it all seems limitless."

- Brandon Lee, a man who knew a few things about life, death, and what we can only imagine in between

And this morning, this morning I got see my sunrise.

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(no subject)

I keep trying to write these informative posts, but my mood is swinging so hard that little revelant winds up tying my words together. It's also hard to stay sitting up. Hard to...realize that I really did this to myself.

I don't get the timeline. I was an alcoholic junkie,but quit that shit right out before I was 20. Doesn't that count for something? Well, no,because I kept right on smoking.

The kidneything is in part of decades of eating waaay too much Excedrin Migraine. But as I told everyone, it's that or I can't fucking hold down a job. It's shoving handfulls of OTC meds down my throeat so I don't vomit three times a week at work. I had no medical access, but I DAMN SURE had bills to pay.''

THere's not much I'm able to write rightnow. I'm either twisting in the hospital bed, or else cowering in the corner of the bathroom, sobbing forsomeone to take the pain, the nausea away.

Forget smacking my 17th self. If I had known I was going to have migraines like this, I'd just have saved myself the middle man and put a bullet in my own head.

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Update (From Jesse)

This is Jesse,

Teressa's migraines got worse yesterday so we went to the ER last night. A CAT scan her head came up with no problems, but. They did admitted her to the hospital early this morning (3am) due to her high BP (200/140) and heart rate (130ish). They are doing tests and scans today on her heart, cardiovascular, and kidneys so we might know something by tonight, tomorrow at the latest.

What we do know is there is something going on with her kidneys. They think that is what is causing the majority of her other problems at this time.

She is talking and snarking so she is in okay spirits, mainly just really tired of the headaches.

Her or I will update LJ soon or when more is known.

I'm seeing shit

So I've had a migraine for several days now. It veers back and forth between "If I close my eyes between calls, the world won't spin" all the way to....hallucinations.

Let it be said here that I have never hallucinated, at least not since I quit drugs. So that's a solid 15 years of trusting that if I see it, it's real.

Yesterday at work, I swore that I saw man pass directly behind me. Not only was there no one there, there was no one there on the entire floor. Just me, myself, and my seeing shit. Okay, I thought, "Maybe someone IS here and you're just really tired." Occam's Razor and shit.

Then I came to be very grateful that no one was behind on the highway, as I nearly slid off the damn road to avoid a dog. A dog that turned out not to be there.

And of course, I'm beginning to experience the flashes of geometric shapes in the corner of my eyes. This part is well documented by the medical community to be a basic symptom of a migraine. But dogs and dudes that just disappear?

Never had that before. There is nausea that prevents me from eating much of anything at all, which just makes the head pain worse, which then feeds into the next several hours of nausea. I wake up and my heart rate jumps 130, though after an hour it goes back down to 120. (That's my usual resting heart rate. Yes, I know that's bad.) The head pain comes in like a vice and only occasionally drops to semi-functional levels.I get viscerally cold, to where I'm wearing a hoodie AND suede jacket at work, but my head is burning to the touch.

Despite this, I do not have a fever. I don't understand it.

Call in sick! Go to a walk in clinic! Strong arm your doctor into an emergency visit!

Yeah, but I kinda don't want to lose my job. Turns out earlier, while I was just discovering that hey something is really wrong here, I'd eaten up all of my sick time. I've eaten up most of my personal business days. I have vacation days, but I can only use them when the time off is available, to which in a building of 300 employees, is a desperate race to garner.

And I really need to keep one day open, as two of my cats are senior cats, and animals rarely die on a convenient day off.

So I have a doctor's appointment tomorrow. I will go and plead with my lady doctor to make it stop, make it feel better, do something, anything, to remove this very painful fatigue that's washed over me. I will know that doctors are not miracle healers and that diagnosis is a long, slow process of elimination.

So, yes, new shit is happening. I have a doctor's appointment tomorrow.

At least it's not cancer. That much we know. Small blessings.

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Things I would say -

If I could go back in time to my 17 year old self.

(1) Bitchslap the cigarette out of my 17 year old mouth. Bitchslap the OTHER cheek when my younger self goes "WTF?!".

(2) Tell everyone that Donald Trump is a viable presidential candidate. Watch people double over in laughter before collapsing into a silent, horrified disbelief. This would be far, far more shocking than any teenage satanic image I pushed in high school.

(3) I'd sit myself down and try to explain the difference between "nice" and "having manners." Just because you're saying 'Yes ma'm/ No sir' does NOT mean you are NOT an asshole. Try to be nicer and less an asshole.

(4) And I think in the end, the ONE THING I'd really want to tell myself would be this: You are going to be okay. Yes, it's gonna hurt for a good long while. Yes, it's going to impede some forward motion in the years to come.

But eventually, it's all going to make sense. The question will shift from "WHY DID THEY -" to "HOW DO I -". The confusion will ease. The guilt will ease. You'll never believe that time heals all wounds, but you'll believe that you don't need to be cured in order to live.

You'll get through. You will be okay and you WILL get through.

I didn't know all that at 17. Didn't know ANY of that. What kid does? I'd never change my addiction, meeting David, etc. Events like those shaped vast swaths of my identity over the years, and I'm not sure who I'd be without them.

But a few words? A couple of girl-slaps to emphasize my point about not dying of emphysema? Oh hell yeah. Those I'd in a heartbeat.

I'd also probably torture myself about wanting to stop 9/11. That would be hard to resist, no matter what any time travel narrative is being played out.

What would you guys tell your 17 year old selves????

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