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.

According to spell check, I have invented three new words in this post*

Do you know how rare it is for me not to have something playing in my head?  The radio, Pandora, YouTube; TV in the background Charlie-Brown-teacher style? Not to mention Twitter, Google Reader (now Feedly, thank you very much), whatever random selection of lists my curiosity has caused me to Google, and now Tumblr?  In addition to the books on my bookshelf, floor, nightstand, and in my purse? Which doesn't even include the tapes of 9th grade history class failures that my memory dredges up, the earwig my mom was humming in the kitchen, the constant nagging of whatever social anxiety issue is rearing its ugliest head at the moment?

It's pretty damn rare, is what I'm getting at. 

I don't like to sit in the quiet because then I can hear all the things I spend so much time trying to mute; feel all the pain I've devoted a large portion of my brain cells into masking.  It's both a conscious thing - depending on what hurts and how badly it hurts, I have to adjust the interference, turn up the volume on one thing (a funny movie, perhaps, or a comforting re-read) in order to try to combat the intensity of the other thing (a 10+ pain day; a migraine that lasts more than a week; another birthday rolling around without much improvement to show for it) - and an unconscious thing: kind of like how, if you really concentrate on it you can control your breathing or swallowing, but if you don't it'll go on without you. 

It's one of the reasons I'm so bad at meditating - sitting, in the quiet, with nothing but me and my brain? And the pain? Seems like a game of Russian roulette to me.  Too much quiet and who knows what could explode, who knows if I'll find all the pieces/have all the spoons I'd need to glue it back together?  Too risky.

But here's the rub - I can't write well without some semblance of quiet.  I was one of those kids who did their homework without the distractions of music or TV (it wasn't allowed in the teacher's household I grew up in), and, when I got older and went to college and could decide for myself, I found it too distracting to try to write a good essay and watch Friends at the same time.  Not that I didn't write M A N Y college essays in front of the TV - my friends and I liked to say (if somewhat unoriginally) that we weren't earning our BS-es for nothing - I could crank out what most of my professors wanted (their own words echoed back at them/a summary of the book to prove I had read it) without much effort at all, and many a course was completed during the commercial breaks of Mad About You . 

But if I wanted to write?

Really write?  And have it be good? 

That's when I needed - and still need, apparently - a little bit of quiet head space. 

So you can see where Goal A (constantly be distracted, so as not to focus on chronic pain and/or current unhappy life situation) might come into conflict with Goal B (try to write some things that are not completely shitty). 

And the last couple of months - OK, since last summer really, when things started spiralling out of control with my grandmother and I realized that it was going to be a Summer of Suck and that I was going to have to be a freaking Grown-up and deal with Real Actual Problems even though I totally didn't want to - I've been leaning (tipping/falling over into/swimming/basking) into Goal A territory.

Since she died (and my family situation went completely, nuclearly, FUBAR in ways that have left gaping wounds that still haven't even scabbed over, let alone healed), which I can't believe was 9 months ago now, I've been sort of frozen there: emotionally numb (ish - not always) and physically hanging on by the skin of my teeth.

"You've lost weight" my doctors would say, with apparent glee: "That's great!"  Mmhmm: except - I can't eat.  I don't know how to anymore - I am disconnected from food and hunger and fullness and I don't know how to food.  Sounds good, they said.   "Let's add to that," my super-fun/fucked-up body said: "You're definitely in the early stages of diabetes (even though you've lost weight, your numbers are stable, and you barely can force yourself to eat real meals at regular intervals): Let's mess with that even more, give you some new meds and worries/complications about food, and see how you do!" (Hint: I have not done well.)  "Also" said my completely-ridiculous-at-this-point-body "I think you need to be allergic to some more shit, and I know you're trying to eat healthier now, so how about some random allergic reactions to... fruit?  vegetables?  Fruits and vegetables?  The pesticides on certain fruits and/or vegetables that you just didn't wash off cleanly enough?  EVERY MOTHER FUCKING FOOD YOU ENJOY?  How's that sound?" (Hint: Super fun.)

I still don't know what's causing the reactions, although I've just had another round of allergy tests.  When I did them 8 years ago I was literally told not to drink the tap water, because "you are allergic to what's in it."  What the hell is in tap water that I am allergic to? I don't know anymore (who remembers at this point?) but I still drink bottled, so it can't be that flaring up. (She says, as her body laughs with glee.  As if I hadn't learned by now that this shit is not going to make any sense.)

Anyways, aside from the food, there's been other things - health things and family things, and personal things, and feeling sorry for myself things that I could literally rant on and on about for thousands of words - but why spoil all those other whiny posts?  (I will try not to write too many whiny posts.)

The crux of it is, I feel like maybe, I'm thawing out on Goal A a little bit, and am actively hoping that that will help me pursue Goal B. Because I wrote 52,376 words last November, but that story isn't going to finish writing itself.  Because I miss having a place where things are quiet.  Because no matter how many times and how many different ways I have to keep writing this post - the one where I apologize for not being around as much as I'd like and recommit to carving out the words that belong here - you guys always show up, and I couldn't appreciate it more.

I don't have a ton of readers. I would estimate that a more reasonable term for the number of people whose eyeballs will scan across this post would be "smidgen".  But that's ok with me.  Because you're my smidgen, and you're always here when I need you.

So thanks for showing up, Smidges.  I'll do my best (as always - which we know is sometimes better than others) to keep showing up too.

*But spell check is a liar because "unoriginally" and "nuclearly", while horrible adverbs, must be real words.  I will claim Smidges though. 

so here i am

how I've been feeling lately: like pond scum.  like a junkie, only I don't know what I need a fix of.  like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.

so, in general: just awesome.

according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine.  I guess that goes to show you that there are limits to what computers can do.

It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control.  (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)


It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.

It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that. 

It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.

It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.

Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.

But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.

As if I am always just those numbers on the stupid chart, and nobody can see past them.

As if I don't remember that there's more to me than those stupid numbers, most of the time.  As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.

All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.

I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down.  I know it backwards and forwards and inside out.  I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things.  And I'm proud of all of that. 

But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles. 

And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me.  Where I can move without immediately regretting it or hiding how much it hurts.  Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.

It's little things and big things, and today they all feel like big things. 

Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.

But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.

Here's hoping for better days ahead.

As if I wasn't doing enough

I started a new med last night.  For pain (of course).  So far, all I'm feeling is that my pain is turned up a notch, but I'm hoping that that's a result of an overextended weekend, as opposed to a medicine that's supposed to help me.  Of course, this would not be the first (second, third, or hundredth) time that instead of making things better a new med decided to make things worse, so I'm also keeping an open mind.  Fingers crossed, mind open, and Zack on speed-dial.  That's the way I'm making it through this Monday, folks. 

(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.

Giving myself a sticker

It's been a long week. I don't actually know why it's been a long week (and I am getting so sick of saying "I don't know why", since it's how I feel about everything lately), but I am just plum worn down.

Some of it is physical, I'm sure... I'm sifting my way through a particularly bad cycle in my FM pain, due, in part at least, to the unending wetness and yo-yo like weather we've been experiencing here in Massachusetts (Wettest. March. Ever. Literally.).

Some of it's the exhaustion of yet another horrid and unexplainable stretch of total insomnia - as compared to the light-dosing/completely unrefreshing sleep I've been living off of for the past 10 years or so, bouts of total insomnia = days with no sleep at all. At ALL. Nights of repeatedly listening to the Harry Potter books on raggedy cassette tapes (Shut up: they were free), and getting the lovely voice of Jim Dale stuck in my head. (To the point that I sometimes imagine him doing a lilting British narration of my life, and somehow managing to make it seem interesting. "The bread was moldy, and, with a shiver and averted eyes, NTE briskly opened the cupboard and tossed it into the bin. 'No luck on sandwiches today, lovey,' she called, 'How about a nice crock of soup instead?'")

Some of it's emotional - trying to get used to the idea of my Face Surgery (that's what we're calling it here... capital letters required); still being computer-less; having a to-do list that's about 3/4 of a mile long; knowing that 5 of my closest college friends & a cousin-in-law are all pregnant right now, and I am not; failing yet another drug trial, the one that Zack was convinced was going to work; knowing we've been living here for a year (well, not me, I'm about 4 months behind because of My Summer With Grandmother {again, caps required}, but we've been out of the old house for a year anyways), and I am still about 1/5 unpacked: My clothes are in drawers and my books are on the shelves, everything else, all 30 years of my stuff, are still stored in boxes, waiting for me to shuffle through them.

Let's just say that I'm feeling a little behind the 8-ball lately, like I just can't catch up, and am barely able to do anything right.

But today, today I struck gold.

Today I had a moment so right that I wanted to sing, dance, clap, cheer, and give myself a sticker.

If you've been reading here for any length of time, you probably get the gist that Lil Girl is a wonderful, crafty, extremely bright, and terribly stubborn child. Self-willed will most likely be her major in college, and she will graduate with honors with that degree, even though the college doesn't offer "self-determination" as a legitimate option for degrees, because she will just wear down the administrators until they give it to her.

Stubborn as the day is long, that's our Lil Girl. (She also comes by it naturally, as our family tends to run a little towards the mule-side, but that's another post for another day.)

For today's post, you should also know that Lil Girl is sick. She's not a miserable kind of sick, but she's got an ear infection, and a cough, and she's been battling this off and on for at least 5 months. (I'm hoping her immune system is just reacting to her new school environment, and that she inherited her mama's genes there, because ours run to crappy.)

Anyways, to finish setting the scene: Sick, Stubborn Lil Girl. Who doesn't like to be told what to eat or drink on her best day. And now has to take a Rx medicine twice a day. To show how well this process has been going, I offer two examples:

Example A: My brother calls me two nights ago, Lil Girl is wailing in the background, and he says that after 25 minutes of fighting with her to take the medicine, (which included him trying to force her to take it physically), he is giving up. I try - completely in vain - to wave some sort of long-distance magic wand to help everybody calm down, but she winds up going to bed exhausted, crying, and medicine-less, and he very curtly tells me he's "done." I spent a good three hours fuming, post-phone call, wondering what the hell I was supposed to have been able to do from so far away.

Example B: When she arrived at our house this morning, Mum asked her if she had gel in her hair, because it was kind of crunchy (and because, if her mom is doing her hair while she gets ready for work, sometime Lil Girl insists on the full treatment as well). Her mother states that no, it's actually medicine that Lil Girl spit out this morning, but there was no time left to wash her hair.

So, if I tell you that Lil Girl took her medicine for me tonight, before she went home, with only a piece of hard candy (for post-medicine taste changing) and a one song of her choice soundtrack as encouragement, you will, perhaps understand why I wanted to commemorate the occasion with a post.

It's not such a huge thing, really, and it probably had a lot more to do with her than with me (if she had been in a different mood, I have no doubt there would have been a Very different outcome), but there was no fighting, no cajoling, & no controlling (on my part); no tears, no whining, & no feeling powerless (on hers). It was just a simple "This is what we have to do," and then it was done.

And, just for a moment, I felt as if I'd saved the world. Just because one Lil Girl swallowed two teaspoons of medicine without a fuss, I managed to feel just a second's worth of that "I can actually do this" feeling.

And I'll take every second's worth of that that I can get, wherever it comes from.

New meds this weekend... so far, besides making me a little itchy, no help, no hindrance.

We shall see.

Hope your Saturday night is more exciting - and less itchy - than mine.