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* Let's have chicken for breakfast. Start out the day with some protein and see how that feels.

* (forget that I have four cats)

* OMG CATS, I love you but THIS IS MY FOOD. *bats away kitties*

* Kitties continue to press forward.

* Eating breakfast has become warding off the Mongolian invasion.
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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.
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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.
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* 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'.
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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*

Just keep

Feb. 16th, 2017 03:53 pm
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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.
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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.
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I slept 10 hours straight last night. A miracle. I'd hope it to be a sign of Things To Come (like, a real sleep schedule), but hope is a fragile thing. I dare not place too much weight on its shoulders.

Mentally, I am awake, aware, and present. Emotionally, the depression that threatened to swallow me yesterday is gone. Physically? Quicksand. Body wants more sleep. MOAR SLEEP.

Here's the quandary: Do I go back to bed, resulting in a possibly even more groggy Teressa upon awakening? Do I just push through it, admonishing my body for its tiredness, as we TOTALLY ACTUALLY DID get enough sleep, at least by science's standards?

I never quite know which is the right answer - and choosing wrong can have disastrous results that can last for days. They tell me that as I go on, I'll become more intuitive about these things. That I'll be more able to tell which one will fuck me up more, even before I act on either.

I'm just not a very intuitive person.
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(Attempting to distract myself, Jesse and I play Rayman Legends, a two player video game. The game allows you to revive a dead player by catching up to the other character.)

JESSE: Crap, I'm dead!

ME: It's okay, I'll wait and get you back in the game!

JESSE: No! Just keep going! Just finish the level!

ME: This ain't no Saving Private Ryan, huh?
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Okay, so that "touch" of depression this morning is turning into a black hole, complete with a star-destroying gravity well. I'm firing on all thrusters trying to stay out of it. Facebook. Funny youtube videos. Painting my nails.

It's just not working today. There's no rhyme or reason to it today. Physically, I feel good. Great, even. Mentally and emotionally?

It's like that episode where Sheridan takes the Whitestar into Jupiter's atmosphere to trap the Shadow ship, except I feel more like the Shadow ship than the Whitestar.

SHERIDAN: Alright Lennier, give me everything you got!

LENNIER: If I were holding anything back, I'd let you know.
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I wake up with just a touch of depression. I've also a headache, so that might be part of it. My dreams have been thematic lately. It gets to where symbolism is an empty gesture at this point. Either I'm (A) stuck somewhere unpleasant/dangerous and can't find my car to get away to safety or (B) trapped in or near falling buildings.

As far as anxiety dreams go, it doesn't get much more straightforward than that.

Jesse came upon a brilliant way of wording something, something that has been drawing both my ire and despair for months now. I don't know if it's a writer thing or else a human thing, but for me to "get" something, it has to be worded perfectly. The words themselves make the difference, not necessarily the intent behind them.

I was on a tear about the phrase "a new normal". I HATE that phrase. My life, while never quite normal before, will now never be anywhere near "normal". It just felt like code for "making do with less", which filled me with so much resentment that I could spit nails. I've done plenty in my life with less and am sick and tired of having even MORE removed. That's not normal, even if it is new.

So Jesse suggested I think about it in terms of "new boundaries". And all of a sudden, I GOT IT. All of a sudden, the frustration of trying to label myself as normal, in any way, fell over with a thud. Boundaries is a word I know. Boundary setting has been one of those life-long lessons for me, so it's a word, a concept that I have practice in. All of a sudden, I wasn't flailing about with new words that meant nothing to me.

Now I'm dealing with words that I've been dealing with my whole life. Familiar. Understood. Practical, useful, something tangible.

I and my life are not normal. From here on out, it never will be. I do grieve for that - greatly some days. But if I set up boundaries concerning things like the fatigue (i.e - give myself permission to rest and nap when needed), then it doesn't NEED to be normal.

It just means I've got some new boundaries, some new rules to apply to my life. THAT I can do.
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There is a musician that lives near my apartment, probably only a few doors down. If I'm lucky, some mornings I step outside to smoke and can hear them puzzling out a melody on their keyboard. The sound of it, the tunes they come up with, are always clear and somewhat haunting.

I don't know which neighbor it is, but I'm glad they live here and glad they practice with their window open. It is beautiful.
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Jesse struck upon a marvelous idea. I have a whiteboard that I now write my appointments on. He suggested that I take note of and mark everyday that I am out of the hospital.

We are currently 22 days and counting from the last hospital release. This is the longest I've stayed out of the hospital in 6 months. It's helpful and a little uplifting to see that number go up.

Which is good, as Jesse has lately been plagued with panic attacks, in part due to me nearly dying. Even I seem to be having some kind of delayed reaction, in that when I lay down over the last week, I have to deliberately wrest my thoughts away from "Omg, I almost died. Like DEATH DEAD. Omg. Omg. Omg."

It makes sense. I'm familiar with the whole "delayed reaction" deal. Hell, it seems to be roughly how I've lived and processed my entire life. It's still hard to work through, to quiet, to smooth over.

Bart, sorry I didn't respond on FB. I can take FB, but only in tiny amounts lately. So by the time I get the notification of the message, I'm already off the site. But yes, overall, feeling better.

I mean, holy shit, I slept in till SIX AM. That's a goddamn near miracle at this point.

Jesse says he wants to move the bed. Rearrange the apartment, because when he looks at the bed, he still sees me, ashen, unresponsive, being huddled over by five EMT's.

That makes sense to me. I sometimes curl up to sleep and think much the same thing, just on the other side. The whole "I almost died in this bed in this position. Is it REALLY safe to fall asleep?" Maybe that anxiety has been contributing to my sleep troubles lately.

Kinda hard to fall asleep when you remember that sleep almost killed you.

So we're going to move the bed at some point. I think that would help. I think it would help A LOT.
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It's sad when you consider watching tv to be a productive use of your time.

And yet, for me, it actually is. It's rare that I have the ability to focus on, comprehend, and continue a story line, even if it's a 30 minute show. I can sometimes put on old shows, but new shows? It's like trying to pull teeth to get me to watch something new, mostly because sitting there trying to puzzle out an episode story arc drains me.

Watching tv drains me. How pathetic is that? Yeesh.

I slept nearly 12 hours yesterday. While I'm awake and coherent at 3 AM, I know soon all I will want to do is sleep. Sleep all day. Sleep all night. Previous to those 12 hours, though, I'd been trying to go back to sleep all day. My body, while exhausted, was having none of this "sleep" bullshit.

My bet is that I'm experiencing depression instead of any actual bodily distress. I get the prerequisite number of hours of sleep - it just all comes in at strange hours. And I KNOW that the want to sleep is at least in part caused by the fact that outside of writing, cleaning, and talking to people (which I don't do much of anyways), my days are all the same. It gets boring and wearisome. The only changes to this is when I go to the hospital - and even THEN, it's become such a regular thing where I get bored and weary from THAT as well.

That sounds like textbook depression to me. Well, depression AND lupus. I can't really control either of those, but that's what it FEELS like it is.

But I've been wrong before about why my body is doing what it does. Fatally wrong, no less. So as my Medicaid has FINALLY kicked in (ABOUT FUCKING TIME), I will bring it up with my new doctor. We'll run the labwork and see if anything is terribly off. If it ain't physical, then I have a better idea of where to go to treat this.

I've been hung up on the word "incurable" as of late. Lupus is incurable, which means I'll be at its mercy for my whole life and there's not jack shit I can do about it. I can treat symptoms, manage my lifestyle, but there will never be a day where I can say I beat it. No amount of fighting - no amount of strength, hope, or journal writing will ever make it become a thing of the past.

It seems like it should be easy enough to accept "incurable." After all, my bi-polar is also incurable and I've gotten along fine with it for years now. But the bi-polar won't KILL me. Lupus CAN. My bipolar also doesn't do things like make me physically hurt or spend days heaving over the toilet. So this is a little (or a lot?) different.

Selfishly, stupidly, it makes me almost envious of cancer patients, whose diseases are far more understood and medically researched than mine. But theirs is also a much more brutal ride than mine, with a clock that ticks much faster than lupus. Slow and steady seems to be the Lupus Anthem. Cancer patients do not have that luxury.

Also, there's no saying **I** won't get cancer, either. Lupus makes one more susceptible to cancer. There's nothing there to truly be jealous of, outside of saying things like "I beat lupus".

Still, I really, really wish I could say "I beat lupus!"

Good god, anyone who is still reading - hats off to you. Even I'm getting sick of reading of what I'm writing.
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I feel...sad. Last night and this morning - sad. Not sorrowful, not grieving, not melancholy, but...sad.

Rarely is the mood able to be boiled down to one word. Right now, it is. It is 3:40 AM. I will try to go back to sleep.

You don't feel sad when you sleep.


Feb. 9th, 2017 08:31 pm
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(Insert iZombie episode, in which the main character, Liv, has visions about the people whose brains she eats) Situation: SPOILER )

RAVI: You did hear what I said, right? The woman you are about to eat was an alcoholic. You'll end up -

LIV: Buried at the bottom of a bottle? Sold.

What happens when the only thing you have to bury yourself in is....yourself?
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**Why am I so tired? Why am I so tired ALL THE TIME?

You know why you're so tired. It's called lupus and you've been bitching about it for months. So don't act like you're all surprised and shit.

**I really want to take a nap. I can barely keep my eyes open.

Don't take a nap. That's being weak. You're stronger than this.

**It's not about being strong or weak. It's about listening to and respecting what your body is telling you.

But my body is all wrong, so isn't what it's telling me wrong, too?

**I don't know. I wish I could tell you, but I don't know.

You're never going to be the person you were.

**No one ever stays "the person they were". It's called change and everybody goes through it. So stop bitching about it like you're some special snowflake.

Am I worth all the misery?

**Yes, you are. Or conversely, you're not. Either way, you're still you. So get on with it.

God, I just really, really want to lay down.

**So go lay down. Just go lay down. You picked up the house, you took out trash, you scooped out litterboxes and even managed an excursion out for groceries and coffee. You've done good today. You deserve to lay down.

Okay. Okay, I'll go lay down. Thank you for saying I deserve to rest. Sometimes I forget that.

**I know. That's why I'm here, to tell you that you that it's okay to rest.
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Y'know those days where you know it's gonna be one of THOSE days, immediately upon awakening? Yesterday was one of those days. I was tired beyond belief, but somehow managed to push through it and not go back to bed. I astounded myself in not taking a nap, really, so heavy was the exhaustion.

This morning feels much the same, though I'll have to be awake at 4 PM to do some character creation for an RPG Pat's running online. I pray I can make it to 4 PM. Make it to 4 PM and be somewhat coherent enough to process information, which is a tricky thing to somedays.

Lately, Jesse and I will be talking and halfway through conversation, I forget what we are talking about. I'll try to backtrack mentally, but half the time I STILL can't remember the main subject. So I'm sitting there, listening to Jesse, trying to pick out key words that will explain why we are talking about whatever, and wind up missing what Jesse says in that exact moment. That just doubles the confusion.

I've always had a wandering attention span during conversations, but I've NEVER before actually FORGOTTEN what the discussions are about. It's alarming to me. It's brain fog, mostly induced by lack of or broken sleep.

Wake up times shift back the 2-3 AM hours, daytime sleep is only half effective in catching up for lost sleep. Going BACK to sleep is difficult. All as it used to be, chasing me towards the same insomnia that drove me mad earlier this month and into the psych ward.

I don't get it - I slept SO WELL right out the hospital. As the weeks have gone on, I become less and less able to sleep properly.

"I really can't remember if I'm insane or an insomniac." - Icon For Hire

In my heart, bro. In my heart.
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It has been so warm this winter (relatively - in the 40's and 50's) that the trees have begun to bud and the sparrows are building nests. Strange things for a strange winter.

It is official - I DO have the typical lupus joint pain now. I'd not noticed it before because of all the Prednisone, which is commonly prescribed to soothe the inflamed joints. So yay, as time goes on, I become more and more the typical lupus patient. I wonder what it was about the kidney failure that kicked that part of the disease in. I've had lupus for years but never the joint pain until my kidneys failed.

Luckily, the joint pain usually sticks to a sharp ache, though I've had a couple of days where it genuinely hurts. I tell Jesse, awed and amazed, that I don't know how he lives with even a modicum of this everyday, as his joint and muscle pain is 10 times worse.

My lupus board has posed the question about how relationships and lupus affect each other. There is SO MUCH to say on that subject that it is taking me a few days to organize what I want to say about it. I know the first couple of months, even knowing that both of us were going to stick through this, Jesse and I argued over EVERYTHING. There was nothing that couldn't spark a heated discussion between us. We fought so much that I was considering couples counseling, fer Christ's sake.

I was desperate and fighting everything that came my way, even if it was good for me. He was desperate and panicked that I might accidentally hurt myself with anything that came my way.

Funny, that. I think the biggest damage I did to myself was the cutting, of which Jesse has no control over. Neither of us were thinking that would be an issue, though, let alone something we'd have to face.

SIDENOTE: What the fuck is it with cats and plastic bags? I swear, it's the loudest sound one can be inflicted with in early mornings. Oi.

But somewhere along the line, we both let up the pressure and now we almost never argue, and even rarer are the arguments about lupus and treatments. I want to examine that more, to see what made the difference.

I was telling him last night that I don't believe in things being spiritually arranged ("right place, right time", etc). I dislike the idea of my role in the Universe being reduced to a piece on a cosmic chessboard, to be moved into position by some invisible hand.

But it is something along Fate, or else extreme luck, that I landed someone who also has a chronic illness. David could never have handled this. And Pat, who would have tried, could probably not also handle all this. Jesse, having his own chronic illness, not only can handle it, but understands it. His support comes from, at least in part, a true empathy, because with the pain, the fatigue, the anger and confusion - he went through that, too.

It has its downsides, as there are days when neither of us have the spoons to do much for each other and we are left somewhat to our own devices. But overall, what I have is someone who gets it. WHO I have is someone who gets it.

I was not always the nicest about his illness before I got sick. I would get frustrated - even angry - that he was sometimes unable to go out, or to do certain chores. Now? Now I get why that taking the flight of stairs down the to car is equivalent to having 50 pounds of bricks land on you. Now I get why certain ways of moving can knock out body parts for hours, if not days.

I mean, really, I was kind of an asshole about it all. Then ***I*** got sick and VIOLA, I understood. The human condition - to not be able to place yourself in someone else's shoes until you, yourself, are wearing those shoes, too.

So I was a dick then. I'm less of a dick now, at least when it comes to chronic illness. That's progress.
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One of the biggest things I've had to adjust to with lupus is that I have to be slower. I have to eat slower, I have to walk slower, I have to bend down and reach up slower. Every movement is done with just a little more deliberation than I ever would have before. Hell, there are lots of days when Jesse is moving faster than I am - and he's got fibromyalgia and arthritis.

It is a strange thing to be so aware of your body. It has at least one benefit, though. Due to eating slower, I tend to savor my food far more than I used to. And as my kidney baselines are improving, I'm able to eat more of the "naughty" foods as treats. A McChicken sandwich with extra onions from McDonalds. A few slices of garlic and alfredo veggie pizza. Two peanut butter Reese's Cups instead of one.

Small things like that are such bright stars in an otherwise blackened and cloudy sky. I think, finally, Jesse and I are are starting to get a handle on this whole renal diet thing. I don't feel as left out anymore - if at all. Jesse's become a wizard at recreating my favorite dishes to be lower in sodium and all the bad things I need to avoid.

And after all these months, I've grown tired of my bitching about food. The bitterness that came from having to cut out vast and wide swaths of what I used to eat. I never realized before just how complicated and emotional someone's relationship with food can be, but mine definitely was.

Like you once said, Peskipiski, having limited food options should make a person MORE creative with their food. David, picky eater that he was, completely missed that point. Jesse and I? We're pretty much down for anything that satisfies the diet requirements and that can produce some pretty unusual dishes. Unusual but damn good.

So it's been my perquisite hour of being awake at the ungodly hour of 4 AM. Time to smoke a final cigarette and pass out for the next six hours. I also had a few slices of pizza.

Goddamn, that was tasty.


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