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(And Karl, your recent post is one that I want to get back to, directly as a response to your post. Despite having been there, I don't think I have any answers. They are both so simple and yet so complicated at the same time. Do not feel as if you are alone or as if the issues you raised were said into a vacuum. I noticed and as soon as I am able, I will respond.)

My own morning inner monologue:

* How are you making it, Teressa? How are you still alive and waking up each day, even if it means sleeping all day, or crying and trying to crawl away from the darkest thoughts, or watching tv in the deepest malaise you've ever known?

* Honest answer? The brutal, honest answer?

* Yes. I want the honest answer, brutal as it may be.

* Truthfully, I don't know. I honest-to-god don't have any clue as to how I'm "making it." I guess I figure that feeling hopeless about the future implies a future to BE hopeless about.

* Is that enough?

* It has to be.

* Okay. Okay. If that's what it is, then that's okay.
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While I no longer believe my life has meaning nor purpose, nor that breathing itself counts as a victory...I am at least still breathing.

"I'm like an ambulance that's turning on the sirens
I'm like a soldier coming home for the first time
I dodged a bullet and I walked across a landmine

Oh, I'm still alive

Am I bleeding am I bleeding from the storm?
Just shine a light into the wreckage, so far away, away

I'm like a junkie tying off for the last time
I'm like a loser that's betting on his last dime

As I walked out on the ledge
Are you scared to death to live?

And the truth that's in the message
'Cause I'm still breathing
'Cause I'm still breathing on my own
" - Greenday "Still Breathing"
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Self care check:

* Showered? Check.

* Taken meds? Check.

* Eaten? Check.

* Am working my way through a big-ass glass of ice water? Check.

* Looming task of the day? Picking up that damn kidney drug, of which the pharmacist was somehow able to run through my old insurance at 150$ instead of the $400 out of pocket cost.

This looms because it is only 6:43 AM and the pharmacy does not open until 8 AM. One would think this is an easy amount of time to slide through. It is not.

* Price of dignity in asking Pat for another huge chunk of money? Paid with regret, as always, especially as this week is rent week. (He pays his own rent, my rent, and his car payment this week.)

Same goes for my father, of whom I asked to pay my electric and internet bill.

* Household chores, such as setting up coffee, putting up dishes, organizing couch and counters, wiping down bathroom, taking out trash, and scooping litterboxes? Check.

* The likely price to be paid at the end of all this, come 8:30 AM when I return home? A day spent like yesterday, asleep most of the day and bitchy in the hour or two that I was awake.

* Attempting to cheer myself up by listening to pop music? (Keisha's wise-ass, ridiculous love of alteration being the choice of the morning.) Check.

I did manage a half-hour run through Mass Effect 3 yesterday. That's something cool. I'm renegading my way through it and am surprised that it doesn't always make Shepard a bastard.

I'm playing Male Shep, just to engage in the gay romance that was finally introduced in the third game. The Midwest can suck my dick.
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I managed a bath three days ago. It's time for another one. Here's hoping I can find it within myself to do so today.

And yep, Matrixx, that would be one thing if Jesse had planted a big, sloppy kiss on our friend, or if he had made flirty remarks to our friend. But our friend is obviously, outright straight. We respect that. No sexual remarks, either directly or indirectly, have ever such occurred, so the outbreak of homophobia towards us was extremely jarring. And saddening, as it hurt both of our feelings greatly.

Cinema, I am considering posting a letter to him explaining our separation. Whether or not it falls on deaf ears, well...that remains up to our friend. It will at least explain OUR silence.

And Radium, yeah, it still shocks me to run into people who have such archaic and (in the end) self-absorbed thoughts, as if gay or bisexual men are sexual predators who will lure people into a comfortable trust before they lay waste to someone's butthole. Being the Midwest, I shouldn't be surprised. And yet, time and time again, I am.

We are nearing our yearly run of re-watching Babylon 5. I have watched it at least once a year for the last 12 years. I always find something new to relate to, every time. I've waffled over the years, finding myself relating to G'kar and Londo to varying degrees at various times in my life.

I've decided that I don't want to be either of them.

Both of them were ruled by anger, grave calamities, and acceptance in difficult ways. G'kar, of course, comes to a much happier ending (though I couldn't handle waves of religious acolytes pounding at my door. I can barely handle maintenance knocking on my door.) Londo does find peace at the end, in the final books that deal with the Centauri Prime arc. But it is a peace that is like G'kar's, won only through a lifetime of loss and years of well-intended but ill-made decisions.

That is one of the beauties of science fiction and fantasy. It allows to ask and answer questions about our humanity that can only be done so when dealing with non-human characters.

That show, for being over 20 years old now, is still illuminating for me.

I don't know what else to write. I am so tired. I got over 12 hours of sleep yesterday and it still wasn't enough. I remember the last time I felt truly rested - and it took five solid days of sleep to get there. Even then, the "restful" feeling lasted a single day and then WHAMMO, I was back to being utterly exhausted no matter what. Five straight days of sleep is not something I can afford very often, if rarely at all.

The words "chronic fatigue" does not even begin to do justice to what this phenomenon really does to a person.
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Jesse's and I's mutual friend have made a few blunders that are making us reconsider our friendship with him. See, I surround myself with liberal people and sometimes forget that I am living smack dab in "The Bible Belt", where bigotry - overt, covert, and everything in between - is deeply seeded within the mind of the average Midwest citizen.

He's made casual remarks of how he "wished that he hadn't watched that documentary on how Planned Parenthood tortures its aborted fetuses" (I was too tired to fact-check his ass during the conversation so the comments went mostly ignored.) A few racist comments that are along the line of "I'm not racist BUT-". There's been a few homophobic comments that he doesn't get how gay men would want to have sex when lesbians are just "like, so hot, man!"

That homophobia finally entered our personal realm. Last week, Jesse had said that perhaps a few years down the line, we could be roommates.

After that, sheer silence from our friend. As the days went on without any further contact, Jesse and I began to worry.

This man has serious life-threatening health issues, along with deep depression, that could easily murder him. Multiple calls and texts conveying our concern went ignored. Yesterday I finally texted him that I was going to send a Wellness Check in for him. (Basically where the police come in to make sure there's not a corpse sitting in the living room.)

It was then that our friend hunted me down and explained the silence. The roommate conversation had left him worried that Jesse had been hitting on him and he just didn't know how to respond.

I was like, DUDE. SERIOUSLY?! We frantically worry that you're fucking DEAD and you don't respond because you assume Jesse's going to want to nail you at some point??!! I didn't say that, of course. One thing my mother did teach me well was how to be polite. But as the last day has passed, I find myself more and more irritated with our friend's comment.

Jesse was immediately, extremely irritated with the relayed conversation, stating that he is too old for this bullshit. That he is tired of explaining himself, over and over again, to various "no homo, bro" sorts of people.

I'm getting too old for this shit, too. And too old to fight with people whom (either out of lack of exposure or willful ignorance) find it acceptable to not only believe these things, but to spew them out.

I asked Pat yesterday about the whole "tolerating differences between friends" idea. I asked him "Are THESE the kinds of differences you're supposed to tolerate, or is it more like 'I want to go to Burger King and my friend wants to go to McDonald's' sort of differences?"

The latter, Pat said. The latter sorts of things are what you tolerate, NOT remarks that convey disgust at some of your own personal beliefs. Especially, especially when they start interfering with your own personal lives, as it did with Jesse and I.

I understand this is part of the struggle when finding friends in such a conservative part of the country. Our friend was smart enough to say that he "probably misread it", but then followed that with "but I didn't know what to say".

The correct answer would have been a text that said "I'm going through some personal shit and just need some alone time. Btw, I'm also not dead."

It's disappointing. It gets to where I just want to point blank ask new people about their social views and where they stand on "sensitive issues" such as race, religion, and gay rights. It gets to where I don't want to expend the energy of establishing a friendship (which is a FUCKTON of work for adults in general, and especially people like Jesse and I) just to get blindsided by a big-ass dose of bigotry.

I think the mutual conclusion between Jesse and I is a fade-out of this person's life. I can handle some conservatism in a friend. Pro-choice but would never have an abortion yourself? Acceptable difference. Being completely straight yourself, but are okay with the fact that gay men exist and have sex lives? Acceptable. Not had a lot of ethnic friends and are confused by their culture? Being as this is the whitest of all major American cities, that is also somewhat acceptable.

Refusing to let your friends know if you're alive or dead because you're worried about some dude hitting on you?

NOT acceptable.
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It turns out there's a reason I feel better off the Cellcept (that one kidney drug I keep railing about.) Cellcept is a motherfucking chemomotherapy treatment. It's basically a daily dose of chemo, in pill form. No wonder I get so sick on it.

Also, you know what's more aggravating than hold music? Hold music that breaks in every 15 seconds to let you know you're still on hold. I can hear your hold music. I already know I'm on hold. And that pre-recorded voice always leads to a brief but irritating hope that I've finally gotten ahold of a real person.

Penlessej, that explanation of how the potassium blocker works makes PERFECT sense. So apparently I'd been overworking my kidneys and my body prioritized the focus on my kidneys instead of my heart (leaving it to work harder to cover the slack). I had no idea. It's annoying, but of understandable dire necessity, that our bodies triage themselves. Potassium is one of the most difficult electrolytes for me to not over-consume and it was showing.

Thank you for explaining that.

And Cinema, I've been thinking about your question. About how to define "better." I really haven't figured that one out yet. I know I want a...an acceptance, I guess. A better way of learning how to live with this disease. How to schedule around it, how to be less anxious and frustrated with all the treatments, how to make it simply something that I deal with (like my bipolar) instead of something that DEFINES me.

I know this will take time. Lots of time. Like you said with your own experience, the symptoms are so goddamn prevalent. And right now, it is soooo easy to feel like just a series of symptoms and setbacks. "Better" would be feeling like a person most of the time.

That's as far as I've gotten with the idea. But it was a profound question you asked and made me start thinking about how "the small moments" are brief respites that my mind and body so desperately needs. A kind of "take what you can get and know that as time goes on, you'll get more" sort of attitude.

There are so many other comments to get to. I am making a concerted effort as I can, day by day, to get to them. Ben, you've written so much about your own health issues and I feel you are such a great source of comfort and solace. And yep, Tom, the dude is the most coldest and clueless of anyone I've ever met. I can - and will at some point - go on and on and on.

Fairy, Gonzo, Harvey, Blozor, so many friends. So, so many of you. I am blessed to have so many friends that it can actually take time and effort to catch up on the support I'm being given.

Of all the things in life to be "over-burdened" with, this is the best kind that anyone could ever want.
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It seems my body, at least for the past couple of weeks, is less set at waking up at 5:00 AM and more set on just getting 5 HOURS of sleep, no matter the time I collapse under the blankets.

Or so tells the clock, when I was exhausted and asleep by 10 PM last and woke up at 3 AM. (Whereas otherwise I go to bed at 11:30 PM and wake up closer to 5 AM). It's easy enough to gauge what time it is by where the stars and moon are sitting when I shamble my way outside for my first cigarette.

Curse those stupid stars. And the moon. That's stupid, too.

Insomnia, medication, and telephones are also stupid )

At least after today's talk therapy, I'm appointment free for the week. (Set mid-afternoon, which is my WORST time of the day, but goddamnit, I need that therapy.) Maybe that'll help.

And maybe the stupid wake-up today time will allow me to bathe, of which I haven't done in mumblemumble over a week mumblemumble. Classic sign of depression and fatigue, but there's really only so far a whore's bath will take you. (The kind where you just washrag and soap up the stinkiest areas, twat, tits, ass and underarms.)

Jesse and I will HAVE to move the bed. Aside from the whole PTSD of "I almost died in this bed in this position TWICE now" that affects both Jesse and I, crawling over him has now become a painful obstacle course. It's set in the corner of the room and as he requires a bedside stand to put his CPAP on, he's got the outside edge. I actually prefer the inner side, squished up along the wall. But fighting his legs, arms, and cats three times a night (let alone my legs, arms, and the couple of cats always piled on ME) is just becoming too painful.

Do I have friends that could help out, or at least accompany me through all these calls, visits, and Furniture Tetris? Yes, two. But (1) Pat still can't walk at all and (2) Amanda, my best girlfriend, is attending university and is often very busy. School is important. She is *thisclose* to getting her Bachelor's degree and I don't want to distract her. I'm also not going to ask Pat to ruin over a year's worth of neural neuropathy healing just to switch out the computer desk and the bed.

I found a wonderful small moment yesterday. When the sunlight, either dawn or dusk, crests over the apartment buildings and there's a slight breeze, the tree leaves will begin moving in time with it all. If you dim your focus just the barest of bits, the light hitting the green looks as if a thousand gold coins are tumbling over each other. It's beautiful. I'd not noticed this since I left Arizona and cottonwood trees 14 years ago.

Maybe I'll start learning how to identify the different trees and birds that hang out around here. A nice, utterly non-energy draining hobby, which can be done from my back porch.
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I sometimes want to make fun of people who don't know the basics of cooking. Two people I know in particular, both of whom are 45 years old. One, Jesse's ex-roommate, who only recently learned how to brown meat. Another, a mutual friend of Jesse's and I's, who only recently learned a bowl of cereal can, indeed, be used as a full meal anytime during the day.

Both of these men are learning how to cook in exactly the same way I did: by finding themselves living alone for the first time in their lives.

This is the situation I found myself in at the age of 32 when I broke up with David. I had no idea how to do anything BUT brown meat and have cereal for dinner. I lived off cereal and pizza for the first entire three months after the breakup. I did eventually come to the conclusion that a grown woman should be able to make a meal that involves more than two ingredients.

But even now, at 35, I'm only a cook un novice. I can work magic with tortilla dishes, make a wicked cheeseburger pie, and know how to get creative with tuna. Anything else? I leave it untouched, terrified and annoyed that I'll likely burn it, undercook it, not realize its gone bad, ruin dishes with terrible combinations of spices, etc etc.

Still, the gaps in learning are sometimes dumbfounding. Jesse's ex-roommate, ever the annoying weasley man, once exclaimed "I had no idea cooking could save money! I'm only spending $140 a week on fast food now!"

Dude, if you're spending 140 dollars a week on fast food - and that is a REDUCTION of money you've been spending on fast food - you're doing something wrong. This is the same guy who has said to Jesse more than once and deadpan, (after 20 YEARS of them living together) that I'm going to die and he will not be able to help Jesse at all.

The man pays no bills but his own, has absolutely NO debt, pays the same rent and utilities that we do, has a functional vehicle that he's not pouring money into, makes over 30 thousand a year, and has an empty living room that could easily fit a single air mattress for a friend to sleep in for a while. (At least if the man bothered to take out his trash once in a while, which he does not.)

And somehow he can't "help" his "best friend" of 20 fucking years, refusing Jesse even a place to stay for a week should something horrible happen to me. All this WHILE ALSO feeling constantly compelled to tell Jesse that I will die soon and that Jesse will be alone.

Seriously, what a dick. There are just not enough dicks in the world to describe how dickish this man is.

David also had a moment that utterly befuddled me. The man had been cooking for MONTHS at the time, making steaks and burgers and chili and whatnot. He did not know how to cook before dating me but discovered he liked to cook and dove into the art enthusiastically. One dinner, however, he asked me how to boil water.

I was like, uhhhhh whaaat? Even I had mastered the art of boiling water by my 30's. I still don't get how he had gotten to be a good cook without knowing how to boil water. I'm also still grateful that he cooked for me, faithfully and daily, every day for the entire 5 years we were together.

Still a dick, but less of a dick. Concerning cooking and pep talks, at least. David never said anything like what Jesse's "friend" said and NEVER would say something like that to anyone, abusive and dickish as he was.

In the end, mocking them would be mocking MYSELF. (Except for Jesse's ex-roommate. He's a jerk and I'll mock him long and loud.) And while I try to stick to the saying of "If you're not laughing at yourself, you're missing out on the biggest joke in the world", there's only so much self-deprecation I'm willing to dance in.

The other friend is less afraid of learning how to cook, I think, and simply more afraid of living alone. That I can understand, having felt that terror for years, even while in a relationship where no amount of food could make up for the abuse dished out. Jesse and I, having both lived (and am currently living) well below the poverty line many, many times in our lives, give him resources, tips, and offers to accompany me to various food pantries.

Though he, too, is befuddled on how to live of the $800 a month AFTER all his bills are paid, which befuddles me, because jesus, if you have 800 left a month left over AFTER aaaalll your obligations are taken care of (bills, medication, rent, utilities, debts, taking care of others, etc)....I guess that just shows how poor I've been in my life.

He is much, much kinder to Jesse than his ex-roommate, however, and that goes a great way in our patience with him. Jesse will cook and offer dinner to this friend and our friend is happy to give away any extra food he has to us. I think the poor, or those who have had loved ones in poverty, understand the power of sharing more than anyone else.

(Not to say that poverty makes one noble. It doesn't. It makes us bitter and hungry. But there is the occasional gratitude - both given and taken - to be learned in poverty.)

I'd planned on writing something funnier, but at least this post isn't all lupus bitching and whining. So, here's to cereal for dinner, Hamburger Helper with well-browned hamburger, and tortillas.
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Let's get the serious post out of the way and maybe later I'll be able to talk about something less...lupusy.

Jesse and I will sometimes go round and round about how far my recovery will take me. About how much of my previous life I'll be able to return to, about how much energy I will or won't have in the years to come. He easily understands the "incurable" part of this disease. It is the "degenerative" part that he seems most troubled by.

As the months go on and I learn more about the disease and how it affects my own body, I can now track symptoms back to my early 20's, if not even a few years earlier. Granted, my kidneys hadn't failed yet, so they were merely tiny licks of what I have today, but they were there.

Add 20 years of no health insurance, no medical care, and an adoration for anything with the words "BACON AND EXTRA MAYO" and, well, 20 some odd years later, you have exploding kidneys. Yadda yadda yadda. All shit we know by now.

Jesse, Pat, and all of my doctors are amazed that my body managed over 15 years with some sort of active(ish) lupus before it all fell apart. They call it an astounding display of sheer willpower.

I don't use the word "willpower." I just state that I'm a stubborn fucking bitch and let it go at that.

But what this means is that on occasion, people mistake my past ability to live with lupus as a legitimate way to measure how well I should be able to live with it NOW (or ten years down the line.) I argue that it simply hadn't progressed to this level, therefore it was easier before and naturally will be harder now.

I also didn't know that this shit wasn't normal. I assumed EVERYONE slapped themselves repeatedly in the face to stay awake at 2 in the afternoon. I assumed EVERYONE spent days and days on end in bed with migraines. I assumed EVERYONE had strange bouts of body pain. Once I found out it wasn't normal? That it was actually HARMING me more than it was HARDENING me?

It suddenly paints those past decades of simply "fighting through it" as dangerous and ignorant. Over 20 years of "just pushing through it" is a huge part of what brought me here TODAY, into such a sorry state of body and mind. I damn near drove myself into the ground - six feet under - that way.

Why would anyone want me to repeat those coping behaviors??? Do they not see that what I was doing was literally killing me, and I am now in even WORSE physical conditions to be trying the same things NOW?

The measuring stick has changed. I don't like it anymore than anyone else does. I'd dare say that I dislike it THE MOST out of anyone. It is incredibly frustrating when people slap that old stick across my palms and want me to use it.

I think Jesse wants to hope. Hope is such a dangerous thing. I dare not place too much weight or importance on its shoulders. Call me curmudgeonly. Call me pessimistic, a nihilist, a negative thinker, whatever. But if this disease is degenerative (and it is) and I must not push my body to the breaking point (like I did), then I cannot just work and push and pull and "hope" it will all sort itself out.

Things are improving. While lower than ever before in my life, the emotional baseline is stabilizing. Despite record-setting setbacks, my kidneys are also chugging along at incredible rates of recovery, 70% operational now. (Or at least were as of a month ago.) Things could go wrong at the drop of a hat, but I am in far better a state than I was eight months ago when the shoe dropped onto my head like an anvil.

Maybe that's luck, or willpower, or blessed, science or stubborn. Whatever it is, though, it will never make this go away entirely. To suggest that I should or WILL be able to act as if it will go away is nothing short of dangerous.

And right now, the most dangerous thing I'm willing to indulge in is fried shrimp. Four now. Maybe another eight months down the line, I can have eight. That's not hope, but it's something.
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* DON'T LIKE: That a wasp flying particularly close to me turns me into the sassy black woman stereotype.


* DO LIKE: The new ambient sound that Jesse found for us to sleep to instead of the rain sound we'd previously been using. It's simply a single tone, a low rumbling. It's meant to mimic the sound of a spaceship engine. I fall asleep imagining myself in the crew quarters of The Normandy.

* NOT SURE IF I WILL LIKE: Having to fall in love with a ton of new people, new ships, and new races on Mass Effect 4: Andromeda. It's a lot of work. But silly and dangerous as it may be, I TRUST Bioware. I hope I find myself as emotionally invested in the new game as I did in my previous, beloved Mass Effect games.

* DO LIKE: How excited I am to watch Jesse finish playing the video game "Nier" (NO SPOILERS! Jesse reads comments sometimes and I don't want him to have it ruined.) I've wiki'd a few side quests for him and have come upon the main plot line, which looks FUCKING AWESOME. I've left a few threads untouched (like, seriously, what is the Shadowlord?), but overall, I'm very excited to see how the game presents the ending information.

* DON'T LIKE: People who refuse to play newer video games due to reasons such as "the newer games are too easy" or "they're too flashy". Puh-lease. Ever play "Dark Souls"? That game WANTS you to die. Relentlessly. No easy about it. And flashy? Ooooh noooez! People are embracing the power of new technology to create brighter, more complex and realistic (or unrealistic) worlds! WE SHALL HAVE NONE OF THIS WITCHERY, THOU OF THE PURE NINTENDO THUMB!

I'm not going to be that asshole who plays Final Fantasy VII 27 times and claims that nothing will ever beat Aerith dying. Even Tomb Raider these days has some seriously sob-worthy moments.

And non-hexagonal boobs. How in the world could you be against THAT?

* DO LIKE: My return, shaky as it is, to doing my nails. And a willingness to try out spring colors instead of just darker colors.


* DO LIKE: That I was able to have four, FOUR! jumbo sized, fried shrimp (all in the same meal!) and not have my stomach melt down from it.

* DO LIKE: Post whoring. Most days, at least.
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I am shocked to find that the potassium blocker prescribed does, actually, help keep my blood pressure even. It's a POTASSIUM blocker. Like milk and dairy shit. No idea it could help your heart work better. So go the mysteries of science.

Jesse and I had an illuminating conversation on recovery from chronic illnesses. He asked how far I could go on the treadmill when I first started exercising. "Uhhh, about a quarter mile," I said. "And even that wiped me out." He then asked how far I was going right before lupus jumped up and went Hey, Lupus! "Two and a half miles, five days a week."

Then he asked me how long it took to get there. I remember it taking almost a month. Then, as a final question, he asked if there were any times that I was too sore, too tired, or too ill to work out.

"Plenty of times. It always set back my endurance, too. But I also always managed to work back up to those two and a half miles", I said, beginning to understand the connection. While this is a hell of a lot more severe than the ability to climb on a treadmill, it helped me realize that (1) it's okay to have setbacks that actually set you back and (2) that I can work back up after that.

Not that I'll ever likely be able to run another two and a half miles, five days a week (metaphorically, at least), but it was a good analogy to ease some of the rage I have about this whole thing.

I like metaphors and analogies.

A new resentment that I am only now beginning to recognize: The insistence that sick people focus on "the small joys of life." I've never had a problem finding or treasuring those moments before. My journals over the last 20 years are littered with records of small moments of delight. The relaxation of a cup of coffee and a good friend. An astounding sunrise. Watching a squirrel dash about on an emerald green lawn.

It's just that before I used to also have BIG moments. A full life, an active life. I do not consider what I have at this time much of a life at all. To be told that I now have to focus on "the small things" feels like I'm being told, yet AGAIN, "to make do with less."

I don't want less. Hell, I don't even want MORE. I just want what I used to have.

It makes me wonder if constantly touting the small moments is simply something that sick people say to make themselves feel better. As if being ill gives us some kind of superpower to enjoy life on kibble instead of the full meals that normal people eat. As if our illness gives us a special sense of inspiration and focus that normal people don't have.

And that, my friends, is just total fucking bullshit.

Idk. Maybe there's merit to the idea. On my good days, I DO notice the sunrise. I DO see the squirrels. I DO have coffee with friends. It's just with so many bad days that stretch into weeks, it gets hard to remember them.

But maybe today is the day Jesse and I can go to the park and just sit on a bench for half an hour. Granted, I'll have to put on, like, a MILLION coats of sunscreen to avoid a flare, but just maybe.

That's where it feels like my life is right now. "Just maybe."

Well, wearisome as it might be, here's to "just maybe."
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Wake up stupid early. (2:30 AM) Do a whole bunch of chores because shit needs cleaned.

Think to myself that I will wait until Walmart opens at 7 AM to do the short shopping run I need today. (There's a Walmart only five minutes from my home, but it is one of the few who have not been converted to being open 24 hours.)

Realize, belatedly, at 5:00 AM that I am exhausted and will likely not be safe to drive at 7 AM.

Go to another, further Walmart and do my shopping at 5:15 AM.

Come home and ask myself two frustrating, infernal daily questions:

(1) Do I want to go to sleep?

No.

(2) Do I have the energy to do anything BUT sleep?

No.

Back to bed, hopefully to catch more hours and more effective hours of sleep than I had last night. (About 4 hours.)
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Jesse is playing a video game called "Kingdoms Of Amalur Reckoning. One of the races in the game are called the "Tuatha".

And the only thing I can think of every time that race is mentioned is that word is one of the words used in Willow's spell to bring Fin Raziel back to her human form.

That movie was made in 1988. That spell was repeated only 2 times in the whole movie. And the word "TOOWATHA" was only ONE FREAKING WORD out of that spell.

And that's the memory association I have. Granted, I've watched the film many times, but to find myself leaping out of bed and exclaiming to Jesse "THAT'S ONE OF THE WORDS THAT WILLOW USED IN HIS SPELLS!" just so clearly stamps NERD on my forehead.

Nerd.
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Ohhh geeeez. I hadn't realized AT ALL that THAT bullshit was what I was agreeing to. I'm already on DW and automatically cross posting to LJ, but LJ comments don't cross post onto DW.

And I can't lose all of the comments from you guys. I just can't. There are SO MANY TIMES that I'll go back years in my journal, read a comment, and go OMG I JUST GOT THAT!. It's a tool I can never give up.

I'll have to figure out a way to back all this up, since deleting my DW and just recopying the entire thing will take days and leave me to manually search for all my DW contacts. (DW is smart and always opens its doors for free when LJ has a major upset, but there's a long line piling up, I've heard).

http://www.ljbook.com/redirect.html

That's what I've used in the past. It opens in Adobe Reader as a full PDF, comments and everything. I'm not sure if it's still a viable tool, though I'll find out later when I try to use it.

Livejournal is my home. I'll be here until they turn off the lights for good. But this is such an uncertain set of rules to be posting under that for the first time in 13 years, I'm wondering if I'll have to find a new home.

Like you said, Cinema - leave a back door wide open in case you have to flee screaming.

Besides, there's only ONE Federation that's ever been worthy of such a name. That name? Star Fleet. Go meet some Romulans and maybe, just maybe, I'll be happy to apply the word "federation" to a country.
quirkytizzy: (Default)
There's been an influx of people moving from LJ to DW due to LJ implementing new policies. I saw there was a new Terms of Service and just clicked Yes because I was tired as shit.

Was there something offensive or worrisome I missed in all that fine print??? Did I somehow give away the content of my own writing to some massively creepy Putin-esque corporation or something????
quirkytizzy: (Default)
After another four-ish hours worth of sleep, I wake up slightly less angry/depressed.

(Is there a word that combines those two feelings? Like, ANGdepressed or something?)

The pain on a general level has dropped from a 7 to a 5, which is still enough for me to know that if I go anywhere today, I'll be on my cane. But at least I'm just limping about the apartment instead of stumbling around the apartment.

One of the inevitably annoying aspects of spring has shown up - wasps. Despite our balcony being fairly well used, they build their shit everywhere. And like a demented version of Don Quixote, I have to swing the broom handle at wildly upward angles to knock down the nests.

Tilting at windmills is NOTHING compared to tilting at Nature's angriest, winged little beasts.

I had the oddest thought earlier this morning. I was thinking about David's ex-girlfriend (the one before me), who had been diagnosed with Rheumatoid Arthritis at a very early age. Teenage years, I think. I don't know much about the disease except that it causes extreme pain in the body and chronic fatigue.

I think about how awful it would have been to have the onset of such a disease come on so early. I mean, your teenage years are supposed to be super active, super social, to have so much energy. To have that taken away so young? I talk about how my disease isn't fair at 35.

Her disease at 17? Way more not fair.

And then I wondered if, by sheer age and length of experience, she was better at handling her disease than I am at mine. I would imagine she would be. It makes me wonder - and hope - that by the time I've got another 17 years or so under my belt, that I'll be better at this disease, too.

Funnily enough, our diseases are similar in symptoms AND we both also require the same kind of doctor: A rheumatoid doctor. Both lupus and RA are connective tissue disorders (though I'm not sure if RA is caused by internal cannibalization as lupus is). An RA doctor is as close to a Lupus doctor as one gets, being as connective tissue disorders are extremely specialized and often rare.

(Did you know that blood is considered a connective tissue? Apparently since it runs to literally every cell, every body part, and every nerve, it is, actually, CONNECTING to everything in your body. Weird, huh?)

I know several people - online and a couple of face-to-face people, with chronic illnesses. I even know of a few who also have connective tissue diseases.

I don't know anyone else with lupus and I've found crawling about on lupus support boards is often too much for me. I recognize the panic, the fear, and it often drags me down. So I've eased up on that.

Strange, so strange, the things and people we think of sometimes.
quirkytizzy: (Default)
It's not fair. It's not fair. IT'S NOT FUCKING FAIR.

And that's all I have this morning.
quirkytizzy: (Default)
"Just let the Tylenol do its work,"I admonish myself. I try to use regular Tylenol these days instead of immediately diving into the Excedrin Migraine. The Excedrin works better for headaches but the caffeine wreaks havoc on my stomach. You'd think as often as I have headaches/migraines (daily) and as present a theme as they've been my entire life, I'd be more patient with the treatments.

Nope. I take them and then ten minutes later, risk collapsing into a wailing heap of frustration. (Or a quiet heap on Livejournal, if it's 3:45 in the morning, as it is now.) And twice as annoying these days, the headaches are always accompanied with the ever tightening round of the blood pressure cuff, just in case my BP has jumped 30 points in the night.

(131/101. I might take half a Carvedilol. Or a Clonodine. Maybe. You'd think I'd be a pro at this shit by now. I am not.) At least I've gotten to the point where I can tell which pills are which simply by color and shape. Rarely a need to compare with what the bottle label says to confirm what I'm taking.

I try to reassure myself that it is, at least sometimes, okay to wake up so stupidly early. I've no appointments, no major errands to run today. I can go back to sleep at any time I'm able. It's not like I'm employed right now.

And yep, Franklanguage, that's pretty much it. At an income of zero, and food stamps needing re-applied to every three months (at least until I get on Disability), food is acquired at the rate of what food pantries and friends will give us. Maslow's Heirachy weeps in my life.

I tire of writing being my first refuge of the morning. There's always more to write than I manage to get down, but it's just words and it's just endless, often unproductive and useless.

But I don't know what else to do. So I write.

I took half a Carvedilol. It's a slow acting drug and usually doesn't drop either number more than 15 points. Safer than the Clonodine, which works fast and plunges numbers down 20 points or more inside an hour.

Let's not fuck with dangerously low blood pressure again, thank you.

I had my first therapy appointment in nearly a year yesterday. The basics of every first therapeutic introduction - a run down of old abuse issues, new traumas, areas I'd like to improve on.

I realized I have a strange habit upon walking into any new therapist's office. I tell them to hold on for just a few moments while I look at their office. I slowly look at every picture on their wall. I note any toys (usually fidget toys) on display. If there are family pictures on the walls, I study those as well. (Never those or papers on the desk. That might cross other patient/confidentially rules.) I comb over every title of every book on their shelves.

It's to get an idea of the kind of person I'll be working with. This lady had a picture of Einstein on her wall and several books that I recognized and respect. She also had a copy of "The Secret", but I told her right away that I was uninterested in any concepts that book introduces. She seemed to understand.

I think her and I will get along. She also has fibromyalgia, and while they are, again, two different diseases (mine could easily kill me, hers will not), it was something to bond over.

I was also diagnosed with depression due to chronic illness. While I'm no stranger to depression, it has only ever come as part of my bi-polar. Unchecked, my bipolar runs straight through classic, textbook lines. Hypomania, mania, mixed episode, depression. Depression as a result of illness makes perfect sense, but it still shocked me.

So we'll see where this will go. I will try what she suggests. I will do my best to complete whatever work we decide to do. It's how I've gotten better in my past. I have to hope that this is how I will get better in the present.
quirkytizzy: (Default)
Gonzo, I replied directly to your comment on the earlier entry, but I screened it. Are you able to see it?

Some mornings time is a guessing game. When the mania began to hit its peak and I was up between 1 and 2 AM, I unplugged the clock. The early morning hours, blinking in red, seemed a dangerous and depressing warning sign. NOW, as the wake up times shift something closer to normal, I sometimes wake up and go "Oh god, please don't let it be 2:30 AM. That's too early."

Most mornings I am surprised to find it is closer to 5:30 AM, which is acceptable to me. If I step out and hear the birds chirping, even in complete darkness, then I am reassured. It is at least 5:30 AM then.

Now with the dr appts and all that piling up week by week, maybe I ought to plug the clock back in. It has an alarm that could wake the dead and raise armies of zombies within the first two blares - of which I'd need, since medicated sleep can be ridiculously deep sleep.

(If you're lucky, at least.)

It's funny the things you notice when you are outside on your balcony so early in the morning. A neighbor across the way has a new curtain - a deep maroon one. Another one has either moved out or moved his computer (possibly a lava lamp?), as I can no longer see the slow, strobing colors of red, blue, purple and green through the window. Another leaves their curtain open to comfortably sleep through the still-chill air of early spring. I see who leaves early every morning, who comes home in the early mornings. On the weekends, I notice those whose have had too much to drink and those who obviously haven't had ENOUGH to drink.

It's the most curious sort of voyeurism. I do much the same in the hospital, endlessly staring out windows, trying to come up with all sorts of little games to entertain myself. Granted, it usually involves cars instead of curtains, but the idea is the same.

My father said that meditation has helped greatly with his chronic pain and that he will sending what has been most helpful for him. I am somewhat skeptical. But at this point, I am willing to try anything that doesn't include (1) chasing around for narcotics or (2) running me another 80 million doctor's appointments. Besides, everyone says meditation helps something for them.

They can't all be wrong, can they?

I know diet can help, but my food stamps have expired and I just haven't had the energy to sit for four hours in a bright, cramped waiting room stuffed with loudspeakers and crying babies. Another thing I have to dig deep for the energy for - and be willing to pay the price of two days straight of sleep for.

Just haven't had it in me to do that yet. So we've been doing food pantry runs. I'm not so much following the renal diet right now as I am just avoiding the really bad foods.

You work with what 'ya got, right? And if "what you got" is enough food to have TWO servings of Tuna Helper, then by god, be ecstatic, because that's probably the best you're getting this week.

(Jesse's amazing at spicing things, though. He makes that shit taste goooood.)

6:18 AM. Given the time, I'd go right back to bed. But I've a therapy appointment at 9...and dear lord, I NEED therapy right now. I've got so little energy it's likely I'll fall asleep in the waiting room.

Maybe it'll be enough of a cat nap. Probably not, but one can always hope. I was thinking that perhaps I was paying the price for an active day of chore and errand running yesterday, but as the last year has unfolded, I'm beginning to realize the fatigue really doesn't care what I do or don't do. It's at best unpredictable (meaning maybe, just maaaaybe today is the day I CAN do chores and errands) and at worst, static and miserable for weeks on end.

I'll try taking a bath. It has a 50/50 chance of either waking me up entirely or else knocking me on my ass, but at least I'll smell better and my joints will ache less.

(I've long since given up on showering. I never have the extra spoons - nor the trust in my physical stability under hot water - to stand for 10 minutes without toppling over.)
quirkytizzy: (Default)
After sleeping away 80% of yesterday, and another 100% of the previous day, I woke up this morning planning on going right back to bed. And then I realized, with quite a shock...that there was no pain.

No migraine. No nausea. No arm pain. Joint pain, of course, but nominal. (On a scale of 1-10, 2 or 3 is quite manageable.) I stepped outside for my morning cigarette, marveling at the possibilities of a day without pain.

I'd managed a herculean feat yesterday. I went to see a friend. A good friend, who has never missed a hospital visit, who is the most non-judgmental friend I have ever met, and who I've managed to ignore completely throughout this entire mess of pain and misery. It was beyond healing and made the exhaustion upon returning home worth it.

That's thing - the exhaustion is there no matter what. If I stay home, if I go out, if I do nothing more than sleep all day and wake up only to have a cigarette. I often push myself through it for the very basics, but to do something worth it....that's nothing short of a miracle for me.

The exhaustion will come shortly. It always does, even on the days I wake up feeling well. But there's chores I've ignored for a week that I finally feel up to doing. And with luck, there will be enough to spend some time with Jesse, who has been feeling extremely ignored.

He often resents that I spend extra spoons on cleaning, but the truth is, there are chores that are rarely possible, if ever physically possible, for him to do. They must be done. So I do them, the cost of those chores tumbling spoons to the ground in a clanking mess.

We had a ridiculous argument yesterday. But I realized this morning that he is as welcome to his moments of frustration and sorrow just as I am. We have become so used to the similarities of our diseases that sometimes we forget that they are, in fact, different diseases. His sometimes allows him, much more often than I, to push through his chronic fatigue.

Mine does not, and certainly not at this phase of recovery.

I got snarkier than I should have, throwing around sarcastically phrased statements such as "That's why FATIGUE is listed as the SECOND major symptom of lupus. Aaaaand what's that first part to that phrase...hmmm...could it possibly be....CHRONIC? That's like telling me my joint pain will go away. IT WON'T. That's the first symptom of lupus. And the second...whaaat was that phrase again? Did I mention...hmmm...FATIGUE?"

It did neither of us good and I wake up feeling guilty for having been so sarcastic. But as I regularly throw temper tantrums about my disease, it seems fair that he, too, should be allowed to throw the odd tantrum or two about my disease as well.

It's rare that he expresses these feelings, instead being a caretaker and a lover of extremely attentive and sympathetic proportions. I can't expect him to be Superman all of the time.

Now off to scrub out the catboxes, to which dear lord, need it desperately. I think our air is now comprised more of ammonia molecules than actual oxygen.

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