I feel like I have only one shoe

I wake up too early, headache, heart racing, climbing the walls of anxiety. I took my Xanax and while I'm waiting for it to kick in, I'm going to do what I've always done. I'm going to write. I hope it helps.

It was a strange day yesterday. Jesse and I had a marvelous time together, shopping and then going to a museum of art. We rarely take trips like that and it was immensely enjoyable and connecting. I came home exhausted, of course, but feeling for the first time in foreeever, that the exhaustion was worth it.

We came home and cuddled on the bed for hours, watching Babylon 5. As the hours rolled by, though, both of us were fell with anxiety. The kind that grips your ribcage and doesn't let you breathe, doesn't let you close your eyes, the kind that makes you feel like whipping about the room to try and keep pace with your sprinting heart beat.

Jesse says his was caused by pain. Mine was caused by something ridiculously over-dramatic and pointless.

I was afraid of sleeping.

The last time I felt so exhausted, I fell asleep and almost died. Most nights this is not a problem, so I'm not sure why it came on then. I took my blood pressure hourly, trying to let the numbers - in full health, if not even a few points higher than normal - reassure me. We had been in the sun for hours, which is proven to lead to exhaustion and flares for lupus folks. We had done far more walking than we normally do, which is also proven to lead to utter exhaustion.

It was all explainable and yet, I kept insisting on just one more episode. I love B5. But last night, I used it a reason to not fall asleep.

I fought the exhaustion until 11:30 PM, a time so foreign to me to be awake at. I staggered my meds as to keep an eye out on what each one did to me. Jesse and I talked our way through it alongside the medication. This was extremely helpful.

My meds did relax me and I was able to sleep, but here I am, up far too early for having gone to bed so late, feeling the same fear percolating.

REALITY CHECK: I woke up. I did not die. Fear against facts, my anxiety is unfounded. It is speaking in the tongue of lies. I know what's real - and what's real is that I'm awake and writing. This solidly disproves the theory that I have expired sometime in the night. (Or if I have, the afterlife is bizarrely mundane and still requires scooping out the litterboxes.)

And yet, the fear remains. I think I know why.

I'm day 29 out of the hospital. This should be uplifting. It is instead TERRIFYING, because I keep waiting for the other shoe to drop.

For every day I remain away from the life-saving capacities of a hospital bed, that is another day something could go catastrophically wrong. Will it kill me? How close will I get? Will we catch it in time?

I've never been afraid, REALLY afraid, of Death before. I am now. I am and as is my stupid freaking way, only afraid of it a month after it happened. Delayed reactions are SUCH a bitch.

There will always be another complication. There will always be another doctor's appointment. There will always be labs that return with stilted numbers that require some kind of adjustment. That's just part of the package. I'm well on my way to accepting that part of my disease.

But. Will. It. Kill. Me.

I don't know. I can't say for sure because no one can tell the future. All I can do - all ANYONE can do - is live their lives and just hope that nothing comes along and puts them in the ground that day. That's the best we all get. I know this.

Day 29 out of the hospital. Will I make it to 30? All signs, with my new health now that we've gotten my meds under control, point to Yes. But the Magic 8 Ball that is life gets shaken up a lot. At what point will it say "Not likely"?

I've never been afraid of Death before. I am now.

Day 29 out of the hospital. This is a good number and it means good things. Now I've just got to convince myself of that.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1054736.html

Worse than a beggar

What wakes me up this morning?

Money. The lack of it. The looming bills. We're out of cigarettes, I'll need at least 20 dollars of my psych meds, and an overdue electric bill. I've never been financially secure, save the few months worked at my old job, which I lost because of lupus.

That was such a blissful time. I could take care of myself then. Now I can't even, on my own, scrape enough money up to buy my own cat food and cat litter.

It balls up in my chest and sits on my ribs. It's hard to breathe. It jolts me awake. I don't know how to get through more than a few days - and often, not even that.

I've become a beggar of the worst kind - running my loved ones dry and asking strangers on the internet for money.

Paypal. Email: quirkytizzy@gmail.com

Worse than a beggar. Worse than a charity case.

I don't know what I've become, money wise, anymore, except that it wakes me up in the middle of the night and I have to breathe through it, reassuring myself that at this moment (3 AM, usually) I can doing nothing and I ought to get back to sleep.

It doesn't always work, but sometimes, if I'm lucky, the reality of my financial situation splits from the worry of my disease and I'm able to get in a few more hours of sleep, because lack of sleep sure as hell doesn't pay.

Here's hoping.

On the other hand, I googled the etymology of the full, medical term for lupus. Systemic Lupus Erythematosus. It breaks down in Latin, literally for "the red wolf."

The Red Wolf. That would make an awesome spy name. So when I get better, maybe I'll become a spy and call myself that. The Red Wolf. It'd be pretty cool.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1054473.html

Even if it has nothing to do with Lupus

I wake up insanely grumpy due to a terrible night's worth of sleep. I also must have knocked about my torso recently, because the broken rib that didn't hurt anymore hurts this morning. This is the kind of grumpy where you know if you don't go back to bed soon, you'll just wind up taking it out on those around you.

And Jesse doesn't need me getting all bitchy with him.

I found this post on my lupus boards and related to it so well that I briefly wondered if telepathy was possible and that's why this woman had written this post. Emphasis is mine.

"My version of lupus--in a history of health problems--is that everything is wrong all the time. I don't feel sorry for myself, this is just how it is. One complication leads to the next, to the one after that...it's exhausting. Full time work just doing basic maintenance on myself. Circumstances are such that it gets old, like me ;) Sometimes it seems pointless...always trying to get above ground without seventeen more dr appts, med adjustments or further conflict. I do believe life circumstances affect health, it's only logical.

People don't like to hear this. I am on a pain forum and every time someone gets really down people (well meaning) jump in and Happy Face over it, think positive yadda yadda. One day I said simply that I wish we could allow the topic of despair in the conversation without either whitewashing or making it a disaster. I got such a hostile response from someone I stopped writing there altogether. She started a thread: "Okay, here. Have your conversation. Go ahead" then went on about how hurtful it was to think like that, not to mention inconsiderate.

Not every situation is created equal as has been pointed out here. I was angry that no one even tried to support me--all in the name of "positivity". I wasn't promoting despair, just suggesting it be ok to express because it's hard enough in the rest of the world, or among people who can't understand the kind of relentless exhaustion pain or depression that steals days, months and years from my life with Lupus.

Experience has shown me no matter how well intended, this is not something easily accepted or understood. I don't want pity and especially, judgement. Nonetheless I run into it in endless forms, overt covert and everything in between. I'm a small person and have med sensitivities.

Through a series of unfortunate events and losses I have precious little but appreciate every ounce where I find it. I am a decent person, I can still laugh, I haven't thrown in the towel yet. But after decades of this, I'm not comforted by sunshine blown up my sorry arse.

I do not begrudge anyone else their happiness nor do I recommend my attitude. I don't mean to rain on anyone's parade and believe if someone has found more happiness peace satisfaction or acceptance it is a true blessing. I just ask that I be accepted, in all my curmudgeonly splendor, and not have to tie it up in a big pink bow of hope that doesn't feel genuine to me. I wish it did. Maybe one day it will be me talking about the choice to be happy and having a good attitude. But I doubt it will be anytime soon."


https://healthunlocked.com/lupusuk/posts/134110909/living-with-systemic-lupus

Lupus is not what caused last night's bad sleep nor is it contributing to the pain in my ribs. Lupus is not what broke the AC and thus we slept in a house that was too warm, leaving me to sweat buckets where, sometime in the night, one of the cats peed on the bed.

But fucking hell if it still doesn't remain the largest topic in my mind. Everything is run through the Lupus Filter these days, even if it has nothing to do with this damn disease.

And so I'm grumpy about it. I'm grumpy about the sleep, the rib, the damn A/C, the fact that I have FOUR doctor's appointments in the next two weeks and have to get on the line with Social Security, a guaranteed one hour, bureaucratic, red-taped hell of a time. All the while juggling bills and a specialized medical diet while at an income of zero, knowing that I can't even look for work, as I am still in very early recovery.

Today is the first day in nearly a week that I will be making a concerted effort to nap. Or rather, today is the first day in nearly a week I am not going FIGHT the nap. I am both resentful and grateful for this. Resentful because NOT napping requires such a powerful display of sheer will and grateful because at least I have a day clear of obligations TO nap in.

Cat pee on the bed not withstanding, at least.

Reading that lady's post does not make me less grumpy. But it makes me feel vindicated and at this point, until I can get in a decent nap, that at least is something.

Day 28 out of the hospital. It's fucking sad that THAT is the line of hope I have to hang onto.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1054248.html

The sum of my parts

The day winds down in a considerably better place than it started. A goddamn delicious salad, conversation time with Jesse, and a productive shower all add to the calm of a day spent entirely at home.

I was telling Jesse that I had this terrible urge yesterday to rid my home of everything that reminded me of death. All of my skull and skeleton figurines, the graveyard bric-a-brak, the muted fall colors of fake flowers that adorn the walls around my bed. I wanted to throw it all away and redecorate my home in enough pink and red as to make Barbie's Dreamhouse jealous.

Being as I'm an aging goth, though, ridding my home of everything creepy would require an entirely new apartment. It's just not practical. I've also been staying away from creepy videos, stories, movies, AND conversations.

And I know this as-of-late nervousness about creepy and morbid things will fade. It'll go away and I'll be happily traipsing about graveyards and buying new skeleton adorned snowglobes. And I don't reeeallly like hot pink anyways.

It's just that right now, the subject is awfully close to home. It's surprising to me. Shocking, even. I've been morbid my whole life. This? This is new. This leaves me reeling. A part of my identity has slipped and I'm not sure what to put in its place.

THAT, actually, is sort of a big thing altogether right now. A loss of identity. The regular, mid-life angst is there, but with an assload of sharp and sudden mortality-mongering thrown in there, too.

Eight months ago, I thought I knew myself. Eight months later, I'm not sure at all. I'm thirty-fucking-five. I really ought to have a better grip of what makes me ME.

I don't. All I've been doing is staring at my parts, all scattered and loose, hearing other people say that I'm more than the sum of those parts, and not at all understanding what that means.

Still, it is a good day. I'm not going to redecorate my apartment. I'm instead going to eat a delicious chicken dinner and sleep tonight, knowing that I don't need to KNOW myself to sleep.

At least tonight. That's damn good enough.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1053939.html

All aboard -

The Xanax Anxiety Train.

I've had two anxiety attacks in the last two days, followed by a third one upon awakening this morning. This is unusual. I experience all kinds of strong emotions all the time - what I DON'T often experience is anxiety attacks. The kind that make me feel as if I've scaled a very tall cliff and am just toeing the edge, terrified a strong breeze is going to tip me over and into the void.

There's a reason my last refill lasted me almost 4 months. I just don't experience anxiety attacks often....except lately.

The Dr's appt one was very explainable. Yesterday's started as I tried to lay down for a nap. This is also explainable, at least as in the whole "I almost died here" thing goes. This morning? Not sure, but I can feel myself starting to scale the walls.

Both attacks before took HOOOURS to crawl down from. Part of this is that while I had Xanax, I did not want to take it. Didn't want to feel like I was "giving up the fight" or drugging myself to avoid uncomfortable emotions. Xanax also tends to knock me on my ass. It works quickly and effectively, but in the same way that a sledgehammer works quickly and effectively.

Which is funny, because I'm on the lowest possible dosage of Xanax at half a milligram of it. It still kicks me in the head with steel toed boots. But I know that's not what taking Xanax is for me. It's a medical treatment, for god's sake.

Jesse will do what he can. He'd hold me and talk to me, cuddle up under the blankets, say and do soothing, soft things. I'll spend an hour in bed running through all of my meditative and therapeutic self-talk tools. I even watched tv. Hours of it.

That's how you know I'm having a really difficult day - when I actually watch tv.

Usually all of that works, though. As of the last two days, I've still required medicinal help. It makes me feel weak. This morning, I'm circumventing the "You're weak and self-medicating, Teressa" thoughts and just took the Xanax, regardless of what my opinion of myself is.

It's okay to need medicine. I keep telling myself that. It's okay to need medicine.

So I've been out of the hospital for 27 days now. I am now 31 days from almost dying. Physically, my body is feeling wonderful, outside of crushing fatigue. THAT on its own is difficult. I keep telling myself that three months ago, I would have been THRILLED to have "ONLY" the fatigue to worry about. So why I can't I just be happy about that? Now that it is the only thing to deal with, I realize exactly just how prevalent and difficult that symptom is.

So now I guess is where the emotional part of the last month comes crashing in.

Yeah. Why can't I just be happy about that? I will be, someday. I know this. Jesse tells me to focus on just for today. Don't think about yesterday, don't try to plan for tomorrow, just focus on TODAY.

I used to be so good at that in early recovery in NA. Granted, that was almost 20 years ago. I was a different - and much more elastic, younger person - then. Still, there's merit in the idea of just trying to be, to exist, to be happy, just for today.

It's Saturday. The only thing I have to do today is scoop out litterboxes. And maybe binge on some iZombie and Babylon 5. Definitely watch more of "Don't Trust The B In Apartment 23". Let me pretend for a little while that I'm friends with a New York City debutante and that my life is more exciting than writing Livejournal posts and swallowing Xanax pills.

Could be worse. At least the only thing I have to deal with physically is the fatigue. I'da killed for that 3 months ago. Be happy and grateful for that, Teressa. I can be happy and grateful for that.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1053450.html

(no subject)

* Sleep 14 hours straight.

* Get up because it is hot and my joints ache.

* Think "Wow! 14 hours! That'll keep me going for a while!"

* Three hours later - "I don't care how hot it is or how much I hurt, that bed looks like the best thing evaaah...."

Sometimes I can't sleep at all.

Sometimes I can't stay awake at all.

Can't win for losin'.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1053388.html

Gibson didn't have the internet quite down, but such is speculative science....

Playing the tabletop RPG Eclipse Phase. I ripped my character off as Molly from Neuromancer. I'll bet Molly wouldn't have let the wolf (lupus) slow her down. She'da just gone "I got sharper claws. Bring it, bitch."

*out comes the 4 inch blades under her nails*

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1053030.html

Just keep

In the waiting room at the doctor's office, a wild Anxiety Attack appears (and yes, it is Super Effective):

ME: Why do I have the sudden urge to scream and start running towards the door?

JESSE: Because this is the place where they tell you if something is wrong.

ME: I don't feel this way when I'm in the hospital. Why does going to the doctor make it feel SO MUCH MORE real?

JESSE: You've been in the hospital more than you've been at doctor's offices. It just takes practice, is all.

Just keep smiling and they won't know how scared you are. Smile, make a bad joke when you realize how long explaining the last 7 months to the doctor is taking. Smile. No, you're NOT going to break down sobbing when you walk out of the building. You're going to get in the car and light up a cigarette like a goddamn adult. SMILE, DAMNIT.

I feel so...small against the enormity of this disease. I want to run and hide myself somewhere, except myself IS the problem - all the way down to the cellular level.

Just smile.

They'll never know if you just keep smiling.


This entry was originally posted at http://quirkytizzy.dreamwidth.org/1052768.html

When you assume, you make an ass out of me and -

Do I want to be awake at 6:30 AM, after being awake at 4:30 and then again at 5:30? No. It's annoying enough on its own, but I have a doctor's appointment at 1 PM that I have to be alert enough to get to, to process, and get home from. Then gaming at 4 PM.

All of my adult life, I've experienced what they call the "afternoon slump." Or at least, I THOUGHT that was what I was experiencing. I assumed that everyone who had the afternoon slump did things like slap their face to stay awake, or consume endless cups of coffee well into the evening just to keep their eyes open and to keep from stumbling and falling asleep on their feet.

Now, with Hey, Lupus!, I realize that no, that's not what they mean when they say "afternoon slump." That shit's not normal and I now I know it.

I can't always plan my days around the mornings and so, inevitably, there comes the exhaustion around 1 in the afternoon. It doesn't matter if I wake up at 5 AM or 11 AM - come the afternoon, I'm desperately trying not to fall asleep. I've never much thought to be resentful of it, as I thought it was relatively common.

Now that I know it's NOT? Enter the resentment, the irritation of knowing that if it weren't for this tiny but extremely powerful disease wrapped around my DNA, I could comfortably experience afternoons.

I don't want to have lupus. I don't want to have failed kidneys. I'm an adult, damnit, and I SHOULD have agency to have what I want. I mean, I did not do this to myself. I SHOULD have control, or at least have HAD control. Some set of behavioral actions I could apply to it. But it wasn't ME that went wrong. It was my genetics. And genetics don't give a flying fuck about being a grown-up. So I wrestle it down like a bear, sometimes winning, but usually (as I go down for a nap) losing.

Talk about feeling like a prisoner in your own body. Jesus fucking christ, it is ridiculous.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1052394.html