Seriously, evolution: tears are not a good communication tool

I'm doing that thing where I'm taking a little thing - the inability to get a prescription refilled in a timely manner - and turning it into a big, huge thing - EVERYTHING IN MY LIFE IS FALLING TO SHIT RIGHT NOW. So, if the pharmacist at Rite Aid wonders why that lady who has called everyday this week just hung up while obviously holding back tears: there's her answer.

Zach's new hospital situation is crummy: I don't especially like the hospital, but that's fine; having to learn all new office and blood and nurse people sucks, but I've done it a million times, and can manage again; the hospital itself is a labyrinth that I traveled during the first days of my illness, and being there brings an odd sense of deja vu added with the feeling of 'holy shit I can't believe I'm still dealing with this mess' (since, when I originally fell ill, they told me it would only last a few months); But the main problem is getting in contact with him is near to impossible.

If there's one thing I've got down at this point, it's how to keep my meds refilled - I know which ones have to be written and mailed (or picked up) and which can be called in, and I USED to know approximately how long it would take from phone call to fax to authorization to filling to pick up for most of my regular meds. This new place?

I might as well be calling him in Hades, leaving messages with Cerberus, or sending them via Charon's freaking ferryboat.

I left a message last Thursday, saying who I was and what I needed, knowing I had about 5 days worth of meds left. I heard back nothing ... Ok. So I called back on Monday, and left another message. Tuesday, I called Rite Aid, and since they still had no new prescription, I called again. I repeated this again on Wednesday and Thursday - when I did finally manage to speak to a nurse who assured me that Zack was in the office that day, and she would make sure he sent the refill to the pharmacy. (I knew he was in that office on Thursdays, hence why I called LAST Thursday, but... moving on.)

This morning: Rite Aid reports, still nothing. I called and talked to the same nurse. She said she would get the message to Zack at his other office and get back to me. (I do not have the phone # for the other office, which is a HUGE problem, I realize now, but how was I supposed to know that then?) Hours pass; No call from Rite Aid or the nurse. Now it's 4:00 on a Friday afternoon, I'm out of pills, and I call again, leave a message.

5 minutes later, she calls me back: She spoke to Zack who said he sent the rx yesterday, but will resend it right now. Thanks and gratitude all around: Have a good weekend! 

No confirming call from Rite Aid.... so, at quarter to five, I call them, and the pharmacist says "nope." WHILE I AM ON THE PHONE WITH THEM, I get the Robo-call from Rite Aid, which I answer: "Your recent prescription requires additional information from your doctor before we can fill it. Please call your local Rite Aid" So I call them back, and a new, very cheery pharmacist puts me on hold. And plays cheesy 80s music in my ear for 10 minutes, and now it's after five on a Friday, and ...

"We don't have any refills left on that prescription."

No, see, the reason the robot called me is because my doctor just called the refill in, otherwise it would have no reason to call me.  More hold time, more cheesy 80s music.

And now - I freely admit - I am beyond frustrated. I am ready to lose my mind because this isn't even one of my complicated drugs: this is a base line drug! This is a "I can barely function, and this drug gets me to barely" drug. This is not some miracle cure I'm chasing: this is a drug I have been on for 9 years, that I refill every single month of those 9 years, and now it's after 5:30 on a freaking Friday, and you're going to tell me...

"You should call your doctor's office and have him resend it. Sometimes this happens."

And I can tell at this point, that I'm not going to be able to continue the conversation. I'm just. Done.  I'm not a person who gets mad and starts screaming (generally): when I get upset the tears gather behind my eyes and my throat gets clumpy and I start to have to swallow and sniff a lot, and take a lot of deep breaths and blink repeatedly and hope that the other person doesn't notice that I'm probably going to start bawling at any minute.

I don't think I hid it very well, because the cheery pharmacist lady started apologizing "Sometimes this just happens, you know, it gets lost between us and them... I'm sorry? Maybe he has the wrong number... call him and try again."

And what I say is "I... just. This is ridiculous. Ah. I.  Ok."

But what I mean is "IT IS ALMOST 6 O'CLOCK ON A FRIDAY NIGHT, AND HE'S GONE: HIS OFFICE IS EMPTY, AND THERE'S GOING TO BE NOBODY THERE TO RESEND THE DAMN THING, AND THIS SHOULDN'T BE HAPPENING BECAUSE I DID EVERYTHING RIGHT! I CALLED AHEAD AND I PLANNED IT OUT AND I EVEN GAVE YOU ALL ENOUGH LEAD TIME TO BE STUPID ASSHOLES ABOUT IT, AND IT'S STILL WORKED OUT SO THAT I DON'T HAVE THE MEDICINE I NEED AND THERE'S NO WAY FOR ME TO GET IT UNTIL MONDAY? I'VE BEEN TAKING HALF OF MY DOSE JUST SO I DIDN'T RUN OUT THIS WEEK ALREADY, AND NOW I WON'T HAVE ANY?? I JUST DON'T HAVE THE ENERGY TO DEAL WITH THIS KIND OF NONSENSE! I HATE THE WHOLE WORLD RIGHT NOW."

But I don't say any of that.  I hang up and I burst into tears (and then I get mad at myself for bursting into tears because it helps absolutely nothing) and then I take a lot of deep breaths and I sniff and blow my nose and then complain to Twitter about evolution and then I come here and write this. And now it's after six o'clock on a Friday night, and I have no idea what I'm supposed to do next, but I have to go leave some (non-bawling, hopefully) messages on people's voice mails, so that somebody will help me with this before I lose what's left of my marbles.

---- And... I left a message AGAIN, but the office is closed. I won't hear back, and it's technically not an emergency, so I don't want to call the cancer care line (because that's his service: he's an oncologist). PLUS, the pills are 'controlled', so, even though I've been on them for 9 freaking years, AND you're not supposed to 'suddenly stop' them, they can't give me enough to last till Monday morning.

So, I'm betting I'm going to have the Best Weekend Ever.

I'm already taking a half dose, and it's reminding me that these pills do actually help a little. I am not looking forward to no dose at all. Off to scour all my backups - the travel pills, the purse pills, the bug out kit, - where I know there will be at least one or two hiding, and that'll bring me to Monday without having to no dose at all, hopefully.

But I think you can see why I'm hating the whole world right now. this should be so easy! it is not that hard! all it requires is four or five people to be doing their jobs at the same time ~ but, still -  Here I am. Hitting publish, eating a homemade english muffin pizza, and pretending I didn't just spend an hour crying about people being unhelpful.

Plus also, my dad's been on sick leave/vacation for three weeks, and summer vacation starts Tuesday for the kids, so: totally fine!

So, one of my biggest problems with this space is that it is both awesome and pressure all at the same time.  Good pressure, but still.  Hoping to start up the daily blogging thing again come July, if only because it'll give me a reason to keep the door closed and the TV off.  But I'm working on some things, some projects, in the meantime.  Got stuff brewing. Doing a little bit of non-blog writing every now and then, even. But there's also been a bunch of family stuff (always), and a severe spoon shortage (also always), so I'm only getting through about a third of my to-do list. 

Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing?  This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It. 

I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think?   Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?

As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote.  Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)

So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again.  For the ... third time in under five years?  With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.  

All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.

In Our Night Kitchen

I feel like when you're arguing with a person with dementia (and it just may be my person with dementia, I don't know) that you are arguing with all the people they ever were, only each is closer to the surface than ever:  When she's battling with me over food (again) because she can't remember the last time she ate (even though it was less than three hours ago), I can sort of see her in so many stages of her life:

She's like a newborn, who's crying because it is hungry, and doesn't know how to stop that feeling.  And like a two year old, who wants to eat something, but when you ask what, can only say "Food!" and shakes her head in derision at every option you offer.  And like a teenager who manages to notch the arrow most closely to your heart while being completely absurd at the same time: "You want me to starve because you want to get rid of me, don't you?"  And like a wife who has never lost an argument ("Well, you just have an answer for everything, don't you?");  and a mother who brooks no nonsense ("If I've told you once that I can't eat eggs because of my cholesterol, I must have told you a hundred times: why can't you remember that simple fact???"); and the completely independent human being she is used to being ("Well, I'll just make it myself then!"). 

Plus you get the added bonuses of the paranoia ("You're trying to drive me crazy by changing all the clocks and writing down food that I haven't eaten"), and the confusion that comes from not being able to hear half of the things you're saying, and creating the other half out of whole cloth (I suggest toast with jam and butter, she hears peanut butter and jelly, which she hates with a passion and goes on a rant about how I only offer her things she'd never eat), but those are just the extra fun-features.

And of course, none of that is helpful, because I can't get her to listen to reason (I have listed off every single item of food in the house; I have shown you the dishes from your last meal, which still haven't been washed; I have offered to order in anything her heart desires) or to just eat a goddamn banana or something.     But I'm sitting here, hoping that this time when she wakes up she'll be somehow more reasonable, trying to regain my patience before our next round (and seeing it as a fight isn't really going to help you regain your patience, now is it, NTE?), and trying to remember that she's acting like this because of her disease, not because she hates me (which is how she is looking at me) or because she's trying to be difficult (which is how it feels when she's got a comeback to everyDAMNthing I suggest), but because she can't help it.

Now if only she weren't the single most stubborn person in the universe before she got sick, that might be a little bit more manageable. 

Damn, this is hard.

Things are so much better - and so much worse - than I expected.  I don't know what I expected, really: all of the literature the hospice people give you sort of makes it seem like there's a straight line of decline to follow right through their showing up until she passes away.  But that's not the way it's going at all, which is excellent, of course, because she's still here, and not excellent, of course, because sometimes she suffers so much.

The hospice people say (over and over again) that their goal is to ease her suffering and to support us.  I know they are trying, but I'm not always sure they're meeting those goals.  Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.**  But it's a mental sort of suffering that's affecting her, and all of us, the most.

She forgets who I am now.  Just a few weeks ago that would have been unthinkable.  Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath.  Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well. 

Worse than the forgetting though, is the paranoia.  The feeling that we're teaming up against her, and the repercussions of that.  This morning she woke with the idea that we were going to her mother's funeral.  Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born.  I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning.  And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)

Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things.  But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee.  After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble.  Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment.  (And it takes that long, with breaks built in, for her to get ready for things.)

So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's. 

"Do you think I'd choose a doctor over my own mother??" 

"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."

Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see.  "She's in the coffin two rooms away, and I'm supposed to just leave her there?" 

"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then.  She's not here right now, so we're not disrespecting her."

"Do you take pleasure in reminding me that I've been motherless for most of my life.  Do you think I don't know that? "

"No, ma'am.  I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."

"Well, it's not what I'm doing."

This back and forth only got worse, as every sentence was another foot in my mouth.  Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.

"Here, Grandmother, let me help you up from there: it's too low to work from."

"That's not the only thing that's low today."



That's the thing: my Grandmother has a viper's tongue, when provoked.  And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.

The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again.  She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.

 This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental".  Not for my grandmother.  For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her.  It's little boys (she had seven) disappearing and nobody helping her find them.  It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.

So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused.  As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.

She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'

'Grandmother: I don't know what you need, tell me how to help you.'

'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'

'No, ma'am.  I'm not a party to anything I'm ashamed of.  I'm only here to help you, if I can.'

'I hope that's true.'

20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'

 

So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)

Hospice doesn't prepare you for decapitation or slow bleeding, however.  They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice.  And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally.  The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to. 

Damn this is hard. 

*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck.  Good system, everybody!

**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second.  Or until a part of her anatomy is in danger of falling off. 

(PS - Spell check? If Unreedemed is a word, why isn't unredeeming?)

I spent the week feeling like I was in the middle of an ocean, floating and bobbing along, attempting to eat crackers and drink ginger ale without having them revisit me. That's what I get for trying new drugs. And now that that is starting to truly pass (hey: I ate real, non-cracker foods today... this is a plus! Except do you know what happens to your stomach when you try to put non-cracker foods in it after a week of crackers? It does not take kindly to the intrusion, I can tell you that!), I get to have huge emotional upheavals instead! Hooray!

Seriously. Sometimes I think moving to Australia* might be the wisest choice. I'm starting to think of aliases, see which ones fit me best. I don't want to talk about it again, right now, but suffice it to say that I have both cried and cursed more in the last 8 hours then I have in the last three years. Easily. If you are guessing that the drama is somehow sister related, you would be correct. You would also be correct if you guessed that there was no actual resolution (peaceable or otherwise) /conclusion achieved in the final analysis of the day. In fact, while I think some very important things were said, I'm not sure if any of the important things that needed to be accomplished were accomplished. But I tried. God almighty, I don't think I could have tried any harder, and that's all anybody can ask of me.

By "anybody", I of course mean 'anybody but me ', since I apparently am not satisfied with having done my best, but instead am upset that I wasn't able to achieve miracles and (our little) world peace while I was at it, but that's just because I am kind of a jerk to myself.

I am going to go and find something completely unredeeming to watch on television, or some cracktastic type of book to read, or a computer game that will devour my soul for a few hours. (Or perhaps all three of those things at the exact same time.) Anything to not be me for a little bit.


I'll check back in with you all soon, and hope your weekend is full of bright spots that don't include crackers or drama (unless crackers &/or drama are your idea of happiness, in which case, have at it!)


*Bonus points for all children's lit majors who managed to find the Terrible, Horrible, No Good, Very Bad portion of today's post.

I mostly never know the date.

If you're a student, you write your name and the date on your paper everyday; if you're working, it's probable that you have deadlines to meet or e-mails to send that have the day stamped right on them; some kind of people even read the paper every morning, and one of the first things it will tell you - once you get past whatever headline is shouting out at you in its largest print - is what day it actually is.

But for people like me - whose numbers I can't be certain of, although I know there are quite a few - people who hardly ever have occasion to change out of their pajamas, or step foot out of their houses, or see other people in real life at all, things can be pretty different. There can be large stretches of time where I consider myself lucky if I remember the day of the week I happen to be inhabiting, let along the exact number it coincides with on the calendar. I've talked to SAHMs, and patients in hospitals or treatment centers, and - on the opposite end of the spectrum - vacationers who have similar issues ("You mean the 22nd is this week?? How the hell did that happen?")and for the most part - aside from having to double check my Google alarms for doctor's appointments and the like - it's not really all that important.

I mean it's like needing to know what time it is in the middle of the night - I could make the effort to roll over, reach my glasses, put them on my face, and check the clock, but is it really worth the bother, since I can plainly see it is still dark enough out to be sleeping time? No, it's most likely not.
So finding out the date generally enters into the same category.

I know when important things are coming up, don't get me wrong: Birthdays and anniversaries and appointments and all that are filed (semi-obsessively, next closest event first) in my brain, but I tend to send things like presents or cards a week ahead of time, knowing that I'll most likely miss out on the exact date and figuring it's better early than late. Judicious use of Facebook friends' birthday notifications, as well as the aforementioned Google alerts and text alarms for appointments keep me - more often than not - where and when I should be.

When SisterK called last night with the news that my Grandmother had had another incident that required a rush to the hospital, I didn't immediately connect the dots.

She had been having leg pain, intense and kind of sudden, and so they called the ambulance, and when she got there they found out she had a lot of clots in her legs. Like, if you clumped them all together, the things they took out of her would form a softball sized mass, kind of lot. As I'm writing this she is thankfully through with her surgery and in the ICU recovering, with the hopes of getting moved to a regular floor tomorrow at some point, but it's still pretty serious because she was on Coumadin, which is a blood thinner, so this should not have been possible. (Of course they've also been messing with her Coumadin dosage since her TIA in September, which was also caused by a clot, so maybe they just haven't gotten it where it needed to be yet: I don't know. I do know the doctor's keep saying how hard Coumadin is to get right, which makes me wonder why we have 17 different forms of hair growing creams but only one acceptable, but completely ridiculous to administer blood thinner, but that's a rant for a different day.)

She's ok, right now, is the point. Resting and recovering.

But there was definitely a little while there that things were more than somewhat tense, and where I spent a lot of time trying to stay calm and calm down other people as I spread the word that things were bad. And then there was the moment that I almost had a complete breakdown: when I turned on the Daily Show for a few distracting laughs, and instead got punched in the gut with the goddamn date.

"January 19th, 2011" rang out the familiar announcer's voice.

And I nearly threw up.

Because January 19th, 2008 was the date that I lost my Nana.

And which I knew was coming up, but didn't realize I had somehow stumbled most of the way through without knowing the actual date. Three years ago today I was home, sick, sitting on my bed in tears, trying to figure out how a person I loved could have just stopped living. How I wouldn't get to see her again, ever.

And here I was, three short years, 5 miles and probably a million "if only's" later, worrying about my other grandmother, and whether or not I'd get to see her again. (We actually had plans for lunch tomorrow). Same date, same sense of dread, same knowledge that sometimes things just don't get better. But - thankfully, blessedly - different outcomes.

She's not out of the woods yet, and (even if she were) she's not in the best of health regardless, so there's still a lot of worrying to do, still a lot of fear to face. But at least THIS day is over, at least THIS date has past.

I miss you, Nana. Today, and every day.

Ching-wah TSAO duh liou mahng

Day 08: Name someone who has made your life hell, or treated you like shit

You can click any of these links if you're interested in reading about the people who have done me the most wrong - my own personal demons, the PeopleUpStairs (AKA PUS). I don't recommend it because it's depressing, frustrating, and rage-inducing. (That last one really sums it up, IMO.)

TL;DR: These people are awful and horrendous, and hurray! Not In My Life ANYMORE!

Instead of dwelling in my past misery, please to enjoy these fabulous and completely not at all related links:

You jaundiced jumped up, vercordiously pusillanimous piffle. Upon reading this, you are probably muttering something like "Ho ho, sour grapes." You have a point. But my rejoinder, vinegar face, is what hope did those grapes ever have while you live and breathe?

How can you be so blindly unaware of the loathing and revulsion you engender wherever you go? I have had fantasies about attacking you with a machete, but I dare not.

Have you any idea how truly offensive you are, have you any idea at all? Do you know what an idea is? Sorry. Unfair question. You have singlehandedly, completely, enthusiastically, maniacally, with gusto and lip smacking delight, stovered any advancements made in the human condition over the last six million years. Congratulations. You must be so proud. If you once had any redeeming quality, it has been strangled and garrotted by your other brutish traits.

Why is it everytime I think of you I think of pus? Sea slugs are scum sucking invertebrae. Land slugs are slimy mollusc-brained cabbage eaters. But you are just PUS.

If everything in this world has some purpose, some grand plan behind its existence, then yours surely is to show everything else, whether it be a slops bucket in a fried chicken stand, or the gunk behind the fridge, how fortunate it is not to be you. This letter has come to end. But it is to my eternal disappointment, my bitter regret, that you have not.

That wordy and wonderful ode to the people who have done me wrong is brought to you by BlueSwami's hate letter generator. You can click and create your own, if you'd like.

Also of interest, (if you happen to be a geek) are these inventive Chinese curses and their pronunciations, should you choose to learn them. If you'll excuse me, I have to go practice saying the title to this post, just to have it in my back pocket.

PS: If you've never seen Firefly, and it's follow-up movie Serenity, I tell you that you MUST.
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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

30 Days of Truth, Day 01

So here's my first official 30 Days of Truth post, which I found via more than one blog, but I'll search my Google Reader and post a few links, if you'd like. I'm sure you've seen them around, and some of the more stellar responses have gotten me to start thinking on the topics as well, so I figured - good topics? check; guaranteed NaBloPoMo posts everyday? Check; Deep thoughts? Also check. So here we are.

Day 01: Something you hate about yourself

Ugh. I feel like this list could go on forever and ever, and I hate that, for sure: that I'm not more happy with who I am or how I look or more comfortable in my own skin. Whenever I'm reading a book and a character is described just that way - "You could tell she was comfortable in her own skin" - I always think "But how? How did she get comfortable just being who she was? How is that even possible?"

I know it must be possible - I think I know enough people that are just who they are and that's that to know it is possible. But it seems like something that's possible for other people . Not for me. Maybe, some day. But if I'm being honest, I don't really think so. I don't really believe that I'll ever just be happy with how I look, or how I act. Or -if not happy, exactly - but happy enough.

Happy enough not to hate that I need to ask for help for things that I "should be" capable of doing. Happy enough not to hate that I can't drive myself (or walk myself) from point A to point B and have to depend on other people all the time. Happy enough to not hate the way I cry when I'm arguing with someone and how weak it makes me feel. Happy enough not to want to burn the piles down around me rather than hate how I procrastinate dealing with them.

Happy enough not to cringe when I see myself in the mirror in the morning. This is a new one for me, mostly because, at my house, what few mirrors we have are all at standing up person's eye level. If I want to look in the mirror, I have to make an extra effort, so I don't often look in the mirror unless there's a reason for it. But here at Grandmother's house there is a huge honking mirror in the little bathroom. I'm talking about an entire wall's worth of vanity mirror, so that if you were standing in the middle of the bathroom floor and stretched your arms out to the side to touch the walls (which you can do because that's exactly how small the bathroom is), you'd be able to see the whole thing in the mirrors. Which also means that you can see yourself from just about anywhere, including sitting down. And this is the only bathroom I have access to, and so, when I roll in there first thing in the morning, I see myself.

And I find that I am often not pleased with how I look. I even thought "holy crap: that's what you look like today. Ew" the other day. "Ew." Was an actual thought I had about myself, and it made me realize how harshly I judge my physical appearance. It's been on my mind ever since.

I knew I had issues with my weight - being on steroids and the Lyrica and god knows how many other drugs has definitely screwed with my poundage - but it usually only bothers me when I have to go shopping for something nice and nothing nice fits over my boobs. Or when I'm in a group picture - particularly one with all my sisters, and I realize I could put three of them together to equal me (almost, anyways). But, for the most part, it doesn't enter my mind - the good thing about having a body where you have to be measuring things against pain or exhaustion or sick levels in matter of importance is that you realize that being heavy does not equal the end of the world. Sure I'm a little bigger than I'd like to be, comfortably, but it doesn't physically hurt, so it moves way down on the list of things that concern me on a day to day basis.

It hardly ever even makes it onto the list, to be honest with you. I'm not generally embarassed by it and see no reason why I, or anyone else, should be - so it worries me that I can think so poorly about my appearance.

And it's not just the weight - it's the stuff I don't have the energy to devote to fixing: I'm lucky if I ran a comb through my hair twice last week (clip it up and be done with it is my usual motto), I don't wear makeup (although I could often use it) or nice clothes (nice and comfortable are apparently fashion's version of oil and water). I look... tired. And worn out.

And - even though I am tired and sore and worn out - I hate that I look that way. And I hate that it matters to me how I look at all, because if you had asked me a month ago, when I wasn't having to face myself in the mirror every day, I would've said it didn't bother me at all. I don't want it to bother me at all.

So I'm trying to look myself in the mirror now and think at least one positive thing, even if it's just "Look, you made it all the way in here, and you didn't think you were going to get this far today, so that's something" or "You have your mother's eyes, you know, so if you can't say those aren't pretty because she has gorgeous eyes. It's ok that they're tired today, they're still her eyes." Or - as was the case one day last week - "We are not leaving this room until you can think of something nice to say to yourself, you stubborn ass. Because if Lil Girl looked at herself in the mirror and thought "ew," even once, your heart would break, and the least you can do is figure out how to make the same be true for yourself."

I hate that I haven't figured it all out yet, I guess is what I'm saying.

Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

Well, so far,

this operation has not been as big a success in the whole "preventing multiple infections" genre as I might have hoped. I'm on my way back from my second infection since the surgeries, all though I will say that (so far, knock wood, cross fingers) the duration of this infection is hopefully of an atypically (for me) short duration. That is the hope anyways.

I've been pissed off because I told Lil Girl's parents to keep her at home last week when she was sick (which I hate to do) and I specifically did not go to my cousin's wedding this weekend because I was trying to take the safe road and keep myself away from germs and rest up and recover. And then, by Monday morning, I was sick as a dog. Again. So it really didn't matter that I didn't do the things I wanted to do; I got sick anyways. Realistically, I know that there wasn't a connection, but still: pissed.

I am recovering, though: my voice was coming back before I coughed it away this week, and my face wasn't as painful as it had been (before it took on it's new infection throbbing). One strangely unanticipated side effect from my septum repair is this odd tingling in my front teeth/roof of my mouth. The doc says this is because the nerve that runs there begins at the base of my nose, and I say it would've been nice if he had mentioned that before the surgery, but since it's supposed to go away, I'll just keep spraying Chloraseptic on it and drooling like I just got "woot canal".

I can't really judge how healed I might be, what with the new issues, but I'm working through a course of antibiotics (and got back from yet another horrid visit with the surgeon), so hopefully, by this time next week I'll be doing better and will be able to say "I'm healing" without all the caveats. Thanks for your support, in the meantime.

I do have a lot of things I want to do this summer, so keep fingers crossed that this is the END of summer infections for me.

Arrows are not complicated directional systems, people...

I started writing a post about my dad and the argument we got into yesterday, just because it's been bothering me all night, but then he came in and apologized, and we talked, and it felt wrong to post a big rant after that.

Instead: run-on sentences, just for you!

No, really... how about just the highlights of what's going on around here:

- Yesterday, we went to IKEA, which I went to mainly so I could spend some time with SisterJ, who has been spending time with us lately on the weekends, and it makes me smile when she does that. (Thank you, 5-hour energy!)

- IKEA is a gigantic, multilevel warehouse filled with furniture, a complex maze of arrows, and lots of great organizational things that I can't figure out because I am design-ally challenged. I went looking for a table, and came home with four little tiny glass jars.

- I hate IKEA. It took about 4 hours to get through the gigantic arrowed store, and buy those 4 little tiny jars. With (No longer)Youngest Nephew, who spent a great deal of his time varying between complaint and repeated requests that we not 'ditch' him... I have never ditched him in my life, but this store certainly made me consider it.

- Actually, I would've liked to just roll into one of those model rooms and close the door, but there were, sadly, no doors.

- And about 3000 people.

- Who apparently do not understand that you are supposed to go the way the arrow is pointing, not against it.

- I am never going to IKEA again.

- Tomorrow I have an appointment with Zach, that I rescheduled from December. I am sore enough today to know that tomorrow's appointment is going to be torture (always the touching: why must you touch?), but I have to go, because we have not even talked about XMRV or the results from my last round of tests and I do not feel like waiting anymore.

- This reminds me of two things: A) I still haven't written that XMRV post (which means I never sent the info to Janice either: sorry Janice! Brain = not smart) and B)Tomorrow is February.

- What the hell happened to January?

- Here is the only thing worth publishing from that ridiculous rant I wrote:

He's also a real sweetheart, possessed of a great gentleness and a sincerity that seems out of place in the here and now (He shovels the neighbors sidewalks, brings them extra food, and takes out the trash for the older woman behind us, because "it's what neighbors do"... Do neighbors still do that where you live? If it was left to me, I would not even know the neighbors' names.) I don't want you to think he's a monster: I don't think that. He's my dad, and I love him - he's lived with mostly women his whole life (think: 4 girls, my mom, and before that he lived with his ex-wife, and before that, his mother) but he's still clueless enough to think that "Do you have your period?" is an acceptable question; he gave me (and anyone else who ever walked into our house) a classic rock education (I think he was never more ashamed of me than when I got a Beatles question wrong on Trivial Pursuit); he's funny and affable, and, although he too often starts sentences with the phrase "Someday I won't be here anymore...", I don't know what I'll do if that day eventually arrives. I love him a lot, is what I'm saying.

How about you guys: How's your week looking?

“As our society grows more and more health-conscious, good health, too, becomes a virtue, and its absence a vice.*”

I used to be one of those people who watched a lot of nothing type shows - the gossipy ones that run between 6 and 8 - simply because there was nothing good on and I was too tired/sore/sick/whatever to even think about doing anything besides watching TV. At some point, though, those shows just crossed my own personal lines from 'I certainly don't need this information, but it's kind of fun and random to know stuff like whose birthday it is or when I can expect the newest version of Star Trek to hit the local theater' to full out 'I wish I didn't know these things. I don't know why they have to be so mean. I really should stop watching these shows, because it's just upsetting how often they call skinny girls fat or pretty girls ugly or question whether or not someone is gay.' I would end the shows feeling so much worse about the world in general that I just decided to not watch them anymore (Thank you, Tivo for saving me from the wasteland that is the 6-8 time slot in our neck of the woods.)

The worst offender in the Access Entertainment Inside Hollywood Edition Tonight millieu was the most recent (at least to me) addition: TMZ. Not only did they make every slightly positive story seem sarcastic and unnecessary, they were often offensive, rude, and it seemed to me there was even less actual 'reporting' than most of those type of shows require. As if any day's story could be "Based on the information we got from a local coffee barista..." or "You know, my 14 year old nephew has a hunch that..." Perhaps that is a slight exaggeration, but you get the point: I just didn't like the show. Not my thing, no big deal... I know how to change the channel. If you enjoy it, good for you: we'll agree to disagree.

All of this is just to preface that, had I known that the link on AOL was pointing to a TMZ story, I would not have clicked on it in the first place. But also, it serves as a reminder to my own damn self that, having clicked on the link and found out it was TMZ, I should immediately have closed it and NOT KEPT READING.

Of course, if I had closed the tab, I never would've been able to enjoy the wonderful - and supportive - comments of the TMZ commenters. Which, while that might have been nice, and helpful in my efforts to remain sane, would also have created a world in which I do not want to viciously punch people that I have never met, because of their Temporarily Able Bodied prejudice against people with disabilities. Yes, yes: I agree, we all would've been better off.

But I didn't close the tab, which means I got to read such beauties as -

Americans w/Disabilities Act= another lame, retarded (pun intended) law which wastes taxpayer money and opens the door further to ridiculous lawsuits which are further degenerating the judicial system.

I'm sorry you're so bitter and angry about being disabled but it's not all about you and your disability!! Idiots.

in regards to a story where two individuals with disabilities - both wheelchair users - are suing CBS studios because of the treatment they received during a recent Dancing with the Stars taping. (While DWTS is on ABC, it's filmed at CBS, FYI. Maybe I could put more acronyms in here, OMG.) The suit claims that there's no designated accessible seating, that the two disabled men were specifically placed out of cameras' sight lines, that one of the men was seated in a place where he could not see the show at all, and that a camera man threatened to 'run over' the one man's guide dog as it sat in the aisle. The men are suing for damages, and for permanent changes to CBS studio policy regarding their lack of compliance with ADA guidelines.

Ok, so what could the commenters be berating, you might wonder? A whole damn lot, it turns out. I know I've ranted before about Disablism/Ableism, but these commenters manage to use every ableist argument in the book - from "I'm not prejudiced but..." to "Disabled people all should die" - and so, another rant seems long overdue.

Matthew seems to think the suit makes sense, because

They have a disablity and they are different from the rest of us.

But he'd also like to note that

They are smart to not put people in the wheel chair in front of the camera, but the camera doesn't have record in that direction

. Good thinking, Matthew! Don't TELL them that discriminating against them, and it won't count! Moxy was more explicit in his/her condemnation of their attempts to be treated as all of the other audience members, however:

Why would anyone at home want to look at a couple of limb-less cripples in the audience?---TV is escapism, no one wants to see you guys (yes, I went there!).

Lil wants us to know that she's "all for equal rights"

but when they go and ask for damages sorry that is a clear indication that they just want to get paid. A true and honest fighter for equal rights does it for equal rights not for the big bucks.

There seemed to be a lot of commenters who shared Lil's low opinion, that the men should just fight out of a need to see justice done. That the changes would, of course, be forthcoming if they just reported the misconduct to the appropriate authorities. Because that is the way the world works for PWD, as we all are aware. It's just my cynical mind that thinks if they had just sued to change the studio's policy, there wouldn't be quite so much coverage of it, but that's just my warped mind.

Lil continues to make her position clear, stating that

Im so tired of people taking advantage of others in this case Im on both sides. These 2 should not have been treated this way but these 2 should also not be sending such a negative message " oh i didn't get to go in first? I wasn't treated as someone special? (that is not equal rights just so you know) well screw you im gonna sue you for some money.

That's right, Lil: it's not "equal rights" we want, we want to be "treated special." And by "special", of course, we mean things like being able to see the show we came (I had originally put 'paid' here, but turns out the tickets are free) to see, and not being threatened by the staff. How dare we??

More than one commenter echoed Hawks' opinion -

Well, gee - I guess everyone can't do everything and go everywhere

As if the two men should've known better than to try to venture out in public at all, because HELLO - They're disabled. Don't you know disabled people don't go anywhere??? (Or, at least, they shouldn't.)

Sarah thought it was important that we know

If I was disabled, I'd kill myself.

Not that she was suggesting that anyone else do that, of course, just that if it was her... But since these two gentlemen didn't have the good grace to kill themselves before attempting to attend a TV show taping, they decided instead to

probably file(d) this suit not so much about the way they were treated, as the fact that they got a little bitter about the fact that the closest the will come to dancing is throwing themselves on the floor and flopping around like fish

. I hadn't really thought about it that way before, explodingchicken: I'm sure you're right, and they deserve your disdain. They couldn't have simply wanted to enjoy the show like everydamnbody else, and, when they were prevented from doing so, been reasonably upset. No, that makes no sense. It's much more likely that they were jealous of the dancers, upset by their own conditions, ashamed and bitter about the lives they lead. We all know that the disabled life is not worth living, after all.

But you know what? Perhaps I'm taking this too seriously. I mean, after all, who cares about one little dancing show, one little incident? I don't happen to care about DWTS at all, and I never go to TMZ, so why does it even matter what a bunch of their commenters think?

It matters because there shouldn't be a NEED to sue, some 19 years after the ADA was passed, to get into a building that is seating the public. It should be automatic that there is seating available, in places were wheelchair users can access and enjoy the events. But it isn't. We are the public, just as much as anybody else, and that's why it matters.

It matters because these are the things that real people still, in 2009, think about disability, about PWD, and about our place in society. That we shouldn't watch shows about dancing if we can't dance the way they do (in which case, why are any of you TAB people watching - 99% of you couldn't do those moves if I offered you $1 million, now could you?) That we shouldn't complain if we're treated unfairly. That asking for fair and equal treatment is, in fact, only code for the special treatment we feel we're entitled to. That we're asking for more than our 'fair share' by asking for reasonable accommodations - after all, we do get those nifty parking spaces, as many a commenter reminded me. That since we have disabilities, we are automatically assumed to be unattractive ("they only put the ATTRACTIVE people on camera!")


That we need to be "put to sleep." (Thanks, Tru Conservative!)

And it matters because it isn't just a bunch of random internet assholes who think this way either: Even the New York Times was explaining this week that the lives of people with disabilities are different and just plain less.

Those aren't things that people used to think, or attitudes that used to exist: those are things people are saying about people with disabilities today, tonight, right now. And, yes, there were also a few posts by those who were appalled at these type of comments, those that seemed shocked that those attitudes still exist, those who stood up for PWD - whether they were disabled themselves or not. And that is wonderful, to have advocates, to have people who recognize all of the FAIL that is included in those comments.

But the advocates, the people who understood were far outnumbered by those who didn't. Who never tried. Who won't understand a word I'm writing in this post.

And if that's not scary, I don't know what is.



Title quote from The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register.

I've been writing a post for more than hour

that's supposed to be about how ... well, I guess if I could narrow it down to one thing, then it'd be a lot further along than it is right now.

Mostly, though, it's about how I am pissed off at feeling so bad, about having no answers, about having to find the energy to keep looking for solutions. I'm pissed off at having to explain myself to people who don't even care enough to really listen. I'm pissed off about where I am in my life, and the options I've got, and the not knowing what comes next.

I'm just pissed off.

A lot.

So there: 75 minutes of writing, and what it comes down to is I'm pissed off.


Only the other post had more cursing.


I really need to find a way to finish it, because I so rarely feel like cursing that I don't want it to go to waste.

Sorry, no MBSM

today, as I'm not in a "best of" anything sort of mood.

Instead, I'm allowing myself to feel sorry for myself, which is better than feeling angry at myself, which is where I was about 4 hours ago, so it can only get better from here.

Right?

No big deals or anything, just pouting because this newest, bestest, totally heavy-duty/take after major surgery pain med the doc put me on this weekend has been no more useful to me than taking Tic Tacs three times a day. Probably even less useful than Tic Tacs, because they've never made me itchy and never - even when I eat an entire tin at one sitting - made me nauseous either. Can't say that for this newest mega-drug.

It was only a three day trial course, but I feel like if they don't start inventing new drugs soon, I'm going to eventually - and not that distant in the future type of eventually - run out of options. And it's hard enough to keep up hope when there are other drugs still to try. When there's none? Yeah, I'm just not going to let myself think about that until - IF - I ever get there.

But I'm still going to let myself feel sorry that it wasn't this drug. That it wasn't this weekend. That it wasn't this answer.