Saturday, April 12, 2014

Things that shouldn't be hard, but are.

I'm in the handicapped stall in the Bertucci's bathroom, staring at the same four little tiles underneath my feet, trying to breathe, afraid to do anything more, anything other, than that. Outside are 4/5 sisters, a handful of my niblings and not my brother. Inside the bathroom, an older lady who'd held the door open for me when we were both coming in, is coughing in her stall. Peeing.

I'm just sitting and breathing.

In the movies, or books, when a character goes into the restroom to have a breakdown, it is conveniently huge, echoing and empty, or otherwise a single stall with someone rudely banging away on the door. Here, it's me and these four tiles and the old lady in the stall next to me.

And I couldn't have a breakdown even if I wanted to, because everyone is counting on my to be an adult, there has already been enough drama. My brother and older sister already had a disagreement that ended with him leaving the restaurant before we'd even been seated. There was no actual yelling, and it was probably better that he left, because restraint is SO not his thing, but the kids are on edge, the remaining adults are feeling a little awkward, a little off. (Or at least, I am.)

I have not slept - and I mean in any way for more than three minutes at a time - for over eighty hours. No real reason; just a shitty painsomnia cycle combined with brain overload and pills that stopped working all of the sudden. Not completely unexpected or unheard of, just another joy of life with chronic illness. I know I've made it over 100 hours with no sleep before, but it's been a while, and it's definitely disorienting. Everything seems either too close or too far away - as if I'm looking down the end of a spyglass, or as if they are all looking down the end of one towards me. Sometimes both, at the same time.

I've left the table rather abruptly, but when I get back, only one of my sisters notices. She claims I have a weak poker face "The worst poker face", she says. She has no idea how wrong she really is. If she can see through it even that much though, imagine if I had just started bawling in the ladies' room? Imagine if the one who puts everybody else's pieces back together - who can see that my brother's leaving is worrying my nephew and attempt to joke him out of it, who can see that the sister who tried to plan today's visit is poaching in self-recrimination (our first restaurant had been too small, too hot & unable to seat us quickly enough for my brother's patience; this next choice seemed to have no food options for our nephew with multiple food allergies) & try to give her a bit of a bolster (as the one whose plans USUALLY blow up in her face, I know that particular stew too well); who can see which little one is jealous of the baby and which big one is itching for his phone; who notices the fake smiles plastered on and rushes to fill the cracks in between - Imagine if she were to suddenly lose some of her own? 

It is not a thing that any of us wants to find out.

I know I don't always have to be the strong one, or the bossy one, or the one who notices, or the one who tries to help.  It feels like I do, but I don't. Usually, almost always, I WANT to be that one. I don't ever want to be the indifferent one or the one who doesn't care, or the one who walks away. Still,  I try to step back and give people space, and let others step up and fill different roles.

 But sometimes, like today, sitting in the Bertucci's bathroom, staring at those four tiles, trying to pull myself together enough to go back to the table instead of collapsing into a large puddle, I wonder "Why doesn't anybody ever put my pieces back together?"

I hope, some day, that there'll be someone I can depend on to do that for me. With me.

It's a lonely feeling, and I know it's not even 100% valid - I DO have people who care, who help, who fight with me to put my pieces back together: Even today, my sister noticed, asked, tried to help. But sometimes, just sometimes, it feels like I don't have that help, that I can't accept it. And that's a hard way to feel.

And if it took me a little bit longer to put my poker face back on, then I'm just going to have to be ok with that. Because I managed. I pulled through, and ate food, and coaxed smiles out of infants and adolescents and adults alike. I put a smile on my face that was semi-natural and I made it through. And we all made it home.

And that's today's triumph. And I'm going to take it.

Wednesday, April 09, 2014

TBR Mountain? Meet TBR Universe

So if you've been reading here for any length of time, I hope you know enough about me to know that I am an avid reader myself. Of everything. And anything - shampoo bottles, literary tomes, complicated scientific articles, every kind of novel ever (romance, sci-fi, fantasy, crime, thriller, YA...), obscure biographies, how-to books, and so much more. But up until last week I had avoided getting entangled with fanfiction.

My reasoning was not snobbish - I do not consider any kind of reading to be better than any other, after all, and a person who takes immense joy in selecting picture books as presents for people of all ages has very little in to say about other people's reading choices. If you like it; it's worth reading, is my basic reading philosophy. (Which does not mean, if I don't like what you're reading that I'm not going to find some way to build a literary bridge between your (poor) taste and mine, because, really if you like fairy tale retellings, I can find 72 better fairy tale retellings than the one you are reading and then we can talk about it and fangirl together, and won't that be more fun? Yes: yes it will.) Like every reader, I do have issues of personal taste when it comes to books - things that make a good book amazing, subplots I have had enough of, characters I wish would show up more, things that make a good plot go bad - but I'm no literary snob (despite the English Lit department's best efforts).

No: my reasons for abstention from fanfiction were varied & personal  -
  •  A) I didn't know a lot about it, except that it's not always finished & I HATE waiting for things to be finished*;
  •  B) some of the pieces I had wandered upon were ... poorly written/edited/solely smut (not that there's anything wrong with that except for - ) 
  • C) I tend to have my own head canons about things - certain favorite characters, primarily - and I don't like to see those get messed up and
  •  D) the sheer amount of reading material I already have on my plate & an unwillingness to open the Pandora's box of literally ever written character I've ever fallen for having an infinite number of more stories told about them.

But - even with these well-thought out & well-intentioned self-preservation techniques in place - I threw it all out the window one day last week when I started reading a phenomenal Avenger's Fanfiction series. Which I found completely by accident, and which I am very upset there are not more stories in. (See star below.)

But, as often always happens in reading - one thing leads to another and here I am, a week later, having barely put a dent in the multi-verses of fanfiction that's out there, but having a ton of non-canon Avenger feels and ignoring all my other reading responsibilities. 

Literally - I barely have read anything else in a week, and that's unusual for me, because I've always got three-four things going concurrently.  In this case, however, if I don't want to be reading Avenger fanfic, I can just switch over to Sherlock or GoT or virtually any other thing I am even the tiniest bit interested in. Not to mention crossovers. (No seriously: let's not mention them because I maaaaaaaaaaaaaay have spent an entire day and a half stuck in the MCU, and now I'm mad that the Avengers, the X-Men and the Fantastic Four don't all play together in the movies, because of stupid studios.)

There is fanfiction for everything, and for a person who reads as much as I do, this is Very. Dangerous. Information. Favorite author fan fic; favorite character fan fic; favorite book series/movie/television series fan fic; I don't play video games, but if I did? Fan fic.

And it was somewhere between the Nora Roberts/GoT crossover fanfic and the Star Trek reboot fan fic where Bones was finally getting his due that I realized something - some of the first things I ever wrote were fan fic. The Little Women retcon  FIX where Laurie does not end up with whiny Amy and Jo does not marry a professor we know very little about. The Tiny Toons Adventure scripts where they got to hang out with the Animaniacs. The alternate ending to It (spoiler alert) where Bev - who is 11! - doesn't decide to have sex with her friends for no goddamn reason, just because they're lost in the freaking sewers and Stephen King didn't know how to get them out of there without being a creep. (I was 11, and I can guarantee you that it would not have entered my mind to lead the group out of the tunnel that way.  Even if I was a slow learner - and I'll admit I was - 11??? Also: I still think that was a shitty thing to do.)

I've been re-writing endings (And middles.  And beginnings.) of stories since I started reading them.** And while I am extremely relieved that publishing as I was writing was not an option for me (although it may have been and I just... don't share what I'm writing, so it's likely that never would have happened anyways), I'm so glad that the Internet has introduced me to YET ANOTHER group of my people.

I can only rue the fact that it did not include some wormhole that enables me to read while also accomplishing other things, or an extra 52 hours in a day, so that I can devote them solely to reading and actually accomplish something else. As always, there is just so much more to read, and so little time to actually do it.

The sacrifices to readers (and writers) make. ;)



*Please see: Actual Comic Books, a literary art form that I truly love, but only in retrospect. I do not appreciate a bi-weekly serial. I do not like the cliffhanger versions of stories where I'm supposed to wait to find out if favorite characters survive. I get enough of that in my television watching, thank you very much. And also in my book series reading, which I both love and hate: Love spending so much time with characters and revisiting them, hate having to wait for the next book to come out. Am not patient about this, for some reason.  (And this is why I have a half-year's worth of Batgirl comics to catch up on: because I want to be able to read them all in one gulp.)

** One of the many books my mother saved from my childhood is a revision of The Monster at the End of this Book, the first book I remember reading out loud by myself, the first book I loved, as a reader. So, the fact that I then did my own version of it, way back when, suggests I was a little slow to pickup on the whole "fan fiction is for you, you dope."

Wednesday, April 02, 2014

Don't ask me why I watch shows that seem specifically designed to piss me off, ala Dr. Phil & Judge Judy

When I watch a show like Dr. Phil (which: see title) and I see him talking to a person whose behavior is abusive - maybe physically, maybe verbally, maybe emotionally: doesn't matter - and they reach the point in the conversation where Dr. Phil thinks he has broken through to the 'truth' of the matter, that he is making the abuser SEE that they are abusive and that it is unacceptable, and the whole audience sort of breathes a sigh of relief like 'finally: this guy gets what he's doing, he SEES it, and that's going to be good enough," it makes me ... livid? Shake my head? Wonder how a 'clinically trained psychologist' can be taken in by such blatant pandering? All of the above?  Yes: all of the above.

Which is my way of saying I have had yet another 3 1/2 hour 'conversation' with my dad about unacceptable behavior. Mine, to his line of thinking; His, to the rest of the world's.

It seems that my short answers and 'pulling faces' is unappreciated by him - to which I responded "too bad." Short answers and resting bitch face are my least offensive options for interacting with you on a daily basis - a thing that is required because you have gone back on your word yet again and haven't left yet. My tightly drawn mouth is a direct result of having to bite my tongue against the things I'd like to say to you, the names I'd like to call you, the disrespect that the bullied part of me wants to heap back onto you in any effort to expel it. (And which I control not for your sake, but for mine, so that I do not become the bully I hate in others.)

"I'm not even sorry for the faces" I said, at the conclusion of our 'talk': "They're the closest thing to self-control I've got towards you, at the moment. And you're just going to have to deal with that."

That was after three and a half hours of frustrating round-and-round, never-ending saga that anyone of my siblings could basically repeat to you right now, if I called them up, despite not having been at this latest one.

It is, in fact, our family's own special version of the ouroboros - the snake eating its tail, for infinity - He is emotionally distant/abusive/threatening, screws up, calls people names, explodes (usually in a huge, terrifying and abusive way)... there is a 'calming down' period, which is to say a living in denial period where people avoid all mention of the latest incident, then eventually, he is 'forced' (by someone's behavior - not going to lie, usually mine) to 'discuss' it, to 'apologize', to seemingly take responsibility while at the same exact time explaining away his bad behavior by a) becoming the victim rather than the perpetrator (which is how he ALWAYS feels, guaranteed: "I was trapped; you don't understand; I grew up with X...") and b) blaming the actual victims ("Those meds that she's on make her unreasonable"; "Nobody appreciates the shit I do do, everybody only talks about how I screw up" - Well, when you're version of doing stuff is 'making sure there is a roof over our heads' and your version of screwing shit up is 'kicking people I supposedly love out of the roof I am putting over their heads' then, yeah: You kinda have to expect that.)

And round and round and round and round (literally ad nauseam) it goes.

Yesterday's discussion started with my 'bad attitude' which - I am pleased to say - I did not once apologize for. It's not a bad attitude to have boundaries, and to react when they're constantly disregarded (parrots the Adult Child of Alcoholics and Psychology Major, in an effort to actually feel that way, instead of just saying it all the time). It's not a bad attitude to be unwilling to risk being hurt again by a person whose only predictable responses are to lash out at the people around him, particularly when he knows he has a temper (but takes no steps to address it, because "I'm 65 years old" a refrain I have literally been listening to since he was 45 years old) and has a drinking problem (but doesn't see it as one or care to curtail it). It's not a bet I am willing to continue anteing up for - and I said that straight out.

I also told him that he's in denial about the way he actually lives as opposed to the person he thinks he is.
  •  He thinks he's the person who shows up for people, always no matter what. He's actually the person who made the summer my grandmother was dying 3000% worse by picking fights with my mother and sister, threw my sister out of the house the night of her wake and then didn't even come to the funeral. That's who he actually is. 
  • He thinks he's the guy who didn't abuse his children because he never made us go hungry or put us to work at the age of 9 (as he was forced to do when his father abandoned his family). And that's partially true - we've always had food on our table, even when it was tuna, white bread and deviled ham. And while we may not always have been grateful for that (I guarantee that I was never grateful for either tuna or deviled ham), I also don't think he deserves a trophy or cookies or a special award for meeting the bare minimum standard for decency.  I told him that while he may not have been the guy who left, he certainly was abusive. IS abusive. He's actually the guy who told me I was a "cold hearted bitch, just like my mother" and just recently explained that, had it not been for the "burden of me and my 'disability'"(which he put in goddamn air quotes), he and my mother would not be breaking up. He's actually the guy who made me* afraid to EVER make a mistake because who knew how out of proportion the punishment would be; the guy who doesn't know how old his children or grandchildren are; who thinks his relationships are fine even though he puts no effort into them at all.   
  • He thinks he's the guy who puts every single dime he earns into other people's needs. He's actually the guy who went out and bought himself a new TV-set for the basement because he "didn't appreciate the cold shoulder" my mother was giving him in the den (even while dodging calls for the past-due mortgage), who goes out and blows ??? money on drinks and food every night, who asked the daughter he "physically can't stand" (and is on a highly resctricted income) for loans so that we could keep the electricity on for Christmas (and won't explain how the money slotted for that bill just disappeared).

I pointed out all of these inconsistencies last night, and at times - like the Dr. Phil guest - he seemed shocked into silence. Into agreement: "I know I'm an asshole" he would say, as if it were news to me. And then, five minutes later there would be the "But what you don't understand is...." and I would sigh and shut it down.

 "It's not that I don't understand. It's not even that I don't care - although at this point I would LIKE not to care - it's that it's not excusable. YOUR PROBLEMS ARE NOT SO MUCH WORSE THAN EVERYBODY ELSE'S. YOUR ISSUES DO NOT ENTITLE YOU TO ACT LIKE AN ASSHOLE TO OTHER PEOPLE - ESPECIALLY PEOPLE YOU ARE SUPPOSED TO CARE ABOUT. YOUR LIFE IS NOT THAT MUCH MORE STRESSFUL THAN ANYONE ELSE'S, AND THE FACT THAT YOU CONTINUE TO MAKE EXCUSES FOR YOUR BEHAVIOR IS WHY I REFUSE TO INTERACT WITH YOU."

Which I had to say at least 15 different times and at least 15 different ways. And in the end it was still "I don't like you being mad at me" and "We at least need to be civil."

No: I am not civil to people who speak to me in abusive ways. No: I am not civil to people who speak to my mother (sister, brother, friend, stranger on the street, lady on the telephone, aardvark in the zoo) in abusive ways.

No: I do not placate bullies any more. Because I have done so: too many times to count. And it's ridiculous to pretend that that does not play into his cajoling routine, that that is not, in fact, a vital element in our tail-swallowing-snake-swallowing-tail loop.  But the fact is that I am determined not to do that anymore, and no amount of bullying on his part (or on the part of my other family members, who continue to make me feel like the unreasonable, bitchy, judgemental one) is going to change that.

I have a right to build boundaries, and have them respected. "It's not fair that you won't at least be civil to me, when I keep asking if you need things or cooking or..."

"No: It's not fair that you continue to ask me questions when I've told you to leave me alone. It's not fair that you use my illnesses (and inability to sometimes preform a task like cooking) as a ransom if I don't behave the way you want me to. It's not fair that I have constant anxiety whenever you are in the house, that I'm always waiting for the next big blow up - those are things that are not fair. Me telling you to show respect to the limitations I've place on our relationship? Is beyond fair. Me, not responding in kind when I have any number of names I could - in all FACTUAL honesty - call you? Is beyond fair. You're getting more from me right now - with all the looks and bitten tongues - then I feel you are entitled to already, so you need to just leave me alone, and let it be."

So: +10,000 points for me, for sticking to the script (and yes, you know I write the script for this sort of thing in my head - if not on paper - at least a million times) and not giving in even when he tried to make me feel uncaring and cold.

But -10,000 points because I know he will do absolutely nothing with anything we talked about yesterday, and I'm just going to have to keep having this conversation until we can finally move out.









*One of the hardest things I do in these 'discussions' is stick to "me statements" because I can't speak for the experiences of all of my siblings with 100% accuracy. But I know damn well that 3/5 of us would say he's been abusive. And the other two would describe abuse while saying "he did it for our own good", which... speaks for itself, in my opinion.

Tuesday, March 18, 2014

I confess: I totally made up more than one science fair set of data. It's too late to do anything about it now, Mr. Lindstrom!*

Because I am currently in a measuring cycle of illness (wherein the doctors want me to record everysinglepiece of information about my illness numerous times during the day, and I hate it, and then I forget, or I am too sick, or I am too sore, or I just do not care at all, and I am tempted to just fill in all the blanks the way you would if you forgot to do your science fair homework and needed to some extra research done), I am going to hit you with a by-the-numbers post:

  • 17 - The number of prescription medications I am currently taking
  •  2.5  - The approximate number I think are actually doing something, maybe? Who can tell?
  • 0 of those are new drugs and 
  • 2 of them are for breathing, so that's good, anyways.
  • 86 - My average resting heart rate for the past month
  • 139 - My average standing (or post-standing) heart rate for the past month - That's just standing: God forbid I try and do anything over that because then
  • 175 - My average "I attempted to also stand for longer than it took for the pulse ox to read my pulse" rate for the last month 
  • 1 - Number of times I have left the house since the calendar read March
  • 0 - Number of times I have left the house since the calendar read March that were not doctors' appointments  
  • 3 - How many different strengths of antibiotics it took to kick this last sinus infection, probably because of
  • 5 - The number of sinus infections I have had to treat since Christmas
  • 17 - Books I've read in the past week
  • 1 - Books I've written a review of for Cannonball Reads in the past week
  • 0 - Reviews I've actually posted on Cannonball Reads in the past week
  •  17,000 - Number of excuses I've given to myself for not writing/posting any of the others
  • 14  - Number of people who have promised to come over/said "we should come over"/attempted to/said they would like to see me since the New Year
  • 4 - Number of people who have actually come over (and one of them is an infant, and the other a husband, so neither of them had much say in the matter)
  • 2 - Number of times I've watched the Veronica Mars movie already (Yay Kickstarter! Yay for getting first run movies delivered to your computer! Boo to computers freezing at P I V I T O L moments in the movie! (If you have seen it, think 'cars', fellow Marshmallows, and you will understand why I was so unhappy.) 
  •  1.5 - Number of days it took me to watch all 3 seasons of VM on Amazon Prime in preperation for the movie 

  • 6 - Number of draft posts I have written since I've published a post here, all incomplete
  • 5 - Number of Tumblr posts I have published for the whatshouldwecallfibro.tumblr.com I am a co-admin of, in the same space of time (because giffing is easier than writing, people)
  • (Currently most popular, by the way: For all of you chronically ill Whovians out there)
  • 63 million (approx.) - Number of times I have wanted to throw the computer and it's stupid Excel spreadsheet of numbers out the window since I have been symptom tracking
  • 3 - Different websites I signed up for because I thought they would help with the symptom tracking, only to bail because it was easier to Excel it myself 
  • 2 - Separate weeks my dad has been on vacation already this year, and I have been stuck in the house with him
  • 0 - Clues that he has that there is anything 'off' in our 'relationship' even though I have spent the better part of 
  • 2 - Separate weeks ignoring him as much as possible (When I had the sinus infection it was 0% possible, because I could not even find the kitchen, let alone make food.) 
  •  
  • 39 - Average number of hours a week my mom has been working at the retirement home for the past month
  • 100% - How exhausted this is making her & how much it sucks to still be the one who can't work, even though I'm 
  • 200% proud of her for kicking ass and doing so awesome (The old people love her, of course: They all request her and one woman told her she was an "angel on earth." But it's also seriously depressing, and even the stories she comes home with bring up all sorts of Grandmother-y related feels for me, so I know how tough it is on her.)
  • 16 - Other things I've got on my to-do list for tonight
  • 2 - Realistic count of how many of those things I might accomplish (eat/shower)
  • 0 - Cares I give that my to-do list will be carrying over to tomorrow
  • 100% - Realization that I should rename the to-do list the "Carried over from before" list, because it's more honest.
And finally:
  • 6:00 - The time, and that means more numbers to mark, more foods to eat, more pills to take, more things to cross of the list. 


*And I usually NEVER cheated, but ... I'm not going to watch this stupid thing for three months: I'm going to put it together a few weeks ahead of time - IF you're lucky.  My brother and sisters were all "do it the night-before-ers", so I think me occasionally fudging the data on whether or not cats and dogs are right and left pawed is not, so much, the end of the world.

Friday, February 28, 2014

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.


Saturday, February 22, 2014

My Inner Elsa

Part of the reason that I like winter are the reasons that everyone else dislikes it: it's cold and inhospitable outside, so you're stuck in the house.

See, for me, that's actually mostly an improvement: I'm generally inside, usually stuck, and the rest of you are out there buzzing around being... productive or something. Ick.

The idea that other people are just as confined as I am, that there's some universality of feeling stuck is somehow comforting to me. I like to picture all of you huddled behind your screens, cozy under blankets, as I'm huddled behind mine, tippy-typing away.

A bit of misery loves company, perhaps, but I find winter (for the most part - there are limits*) to be a cozy, comfortable type of time.  Of course, everyone else in my vicinity is Fed Up (capital F, capital U) with winter, and has taken to Facebook and Twitter to rage about yet another snow day or how spring is bound to show up sometime, right????

But I'm pretty much all set ~ winter allows me the comfort of my heating pad without worrying too much about overheating; nobody else is tan (and therefore can't endlessly comment on how pale I look); indoor activities trump outdoor, with little debate; and - since there are no longer any preschool age children in my care - as long as I don't venture too far outside of my own particular bubble, I'm not a battling a constant barrage of germs. (Knock wood, having said that, because I was with kids this week. And at a doctor's office, so that's twice the wood knocking required.)

And - as I don't have to do the shoveling, and don't mind paying neighborhood boys a little bit extra to clean the ramp, if necessary - I prefer snow to rain, 100%. Rain makes me feel gloomy and Eeyore-ish, sometimes to the point of headaches; Snow makes me feel like curling up with a good book and a cup of Fluff-topped hot chocolate is the only reasonable option in life. Who could argue with that?

So, while everyone around me clamors for winter's end, and moans about yet another storm heading our way, I'm just going to smile slyly, load up my kindle and make sure we're well supplied with hot chocolate.

How about you - Are you begging for spring (open windows, I do miss you), or enjoying the last gasps of our ferocious winter?

 

*These limits are mostly health related - cold is a foe to both my aches and pains and my asthma, the latter of which is worse than it's been in years, because just breathing the nearly frozen air outside is a true struggle. But the heat doesn't help my health either, so it's usually a case of '6 of one...'

Sunday, February 16, 2014

In which the world thinks I hate animals (again)

Aside from one anonymous angry e-mail I got about the fact that I didn't like a certain drug, the only truly negative feedback I've ever received on this site was the time that I had the gall to suggest that the act of acquiring a pet was basically saying to me that I was unwelcome in your home*. The pro-pet contingent was up in arms over my suggestion that pet ownership precluded us (meaning me and whomever the pet owner might be) from having a certain kind of relationship; the "you can't tell me what to do in my own home" response was also quite vociferous; and the worst response - a well written, but sharply pointed "if your friendship comes with those sorts of conditions attached, I'm better off not knowing you" - was something that I had been completely unprepared for (especially considering I thought the person who had written it and I were, at the very least, friendly) and stung quite a bit.

    It was surprising to me then, and continues to confound me now, that the limitations placed on relationships by my illnesses are seen as unreasonable, extreme and beyond understanding, while the limitations that people voluntarily impose on relationships - say, you don't date smokers because you don't like kissing someone who tastes like tobacco, or you're not really friendly with people who go to bars all the time because you've outgrown your barhopping stage - are seen as completely normal, routine, and worthy of respect.

Let me break it down for you a little bit more - Take my example of pets. If you own a pet, it is an actual impediment to me being able to spend time in your physical space. I know that your cat's litter box doesn't smell to you, and that your dogs would never dare to shed, but for someone like me (who is allergic to all sorts of dander and fur, and hypersensitive to smells), your animals are indeed as much of a physical barrier in our relationship as the stairs going up to your apartment, or the perfume you can't seem to remember not to spritz before meeting me.  I have had to leave more than one family occasion because of a reaction to an animal (or the detritus that the animal has left behind, no matter how well you think you've vacuumed), and more than once, I have been either hospitalized or required additional medical attention (or a new drug regimen) for the same reason. [Trust me: there is nothing like a course of steroids to convince me to send my regrets next time.]

Hopefully, this clears up the idea that just locking the animal in another room while I am there means that everything will be fine.  That is far from the most likely outcome.  The most likely outcome is that my allergies or asthma will start up the minute I walk through your door - even though I've already taken prophylactic meds, just to be there - and that it will go downhill - to varying degrees - from there.

I am not saying that you can not HAVE pets: Although I have somewhat of a reputation now as an anti-animal person - I do not, in fact, dislike them.  I think puppies are adorable and little kitten feet are so scrumptious and padded and purrfect that I can't even.  The truth is that I have had to harden my heart to these snuggly little guys out of necessity: so that it just isn't one more thing that I can't have. Trust me, though -> I binge watch cute animal shows, and am definitely not immune to the allure of a waggely tail.

BUT, let's just be clear about the facts here - your pet-friendly house is significantly less (and sometimes completely un-) NTE-friendly. Those are just the truths of the matter, and me saying so doesn't make me some sort of barbarian animal hater: it just means that I'm pointing out the limitations that your choices are creating in our relationship.

It means that I don't get to drop everything and sack out on SisterCh's couch for a week to help after Baby D is born, because an hour in her four room, four cat apartment, and my skin is raw and red and raised, and my nebulizer ain't cutting it anymore.  That is not to say that sometimes I don't bite the bullet and choose the nebulizer and the hives and the steroids and the ER, because I value the people I love and want to spend time with them - the same way I hoard spoons until I have enough to visit my 3-steps-up sister or UJ and his 'your wheelchair won't fit through the entryway' house - these are just the kinds of sacrifices spoonies like me make all the time.

Pointing them out does not make me the Wicked Witch of Whereever Petless People Live.   It literally is just me asking for the acknowledgement that maybe your having animals or steps or a husband who bathes in Axe body spray are all things that I have to accommodate: And that sometimes? I am just not capable of doing so.

It would be a nice change of pace if everything stopped being my fault. 

If people could recognize that that I might love to just be able to drop in for a few minutes and a cup of tea, but with those steps, it'd cost me a week's worth of energy, and I can't do that right now.  If someone would acknowledge that part of living with a brood of cats, dogs - or even toddlers who bring home every germ from day care - is that sometimes your friend/sister/cousin with the wackjob immune system can't come to birthday parties, or girls' nights, or potlucks.

Something I often feel that gets overlooked is that part of the ease of a relationship - the familiarity and flexibility and fluidity of it - is hampered not JUST by my illnesses (which are not choices, btw) but also by your life decisions - having animals, living in a 3rd floor walk-up, only having late night parties, etc.  It's not that there is anything wrong about any of those choices, but let's just stop making this all MY issue, all MY fault -

YOU have made decision that work out great for you 98% of the time: Happy puppy smiles! so many great neighbors! Living in the suburbs! Drinking till the bars close!-  but I happen to fit into the 2% that's leftover and kind of sucks.  The inconveniences and unfair factors related to your choices - like having to lug your groceries/stroller up those three flights of stairs, or having to walk your dog during a blizzard , or having to wake up the morning after you've closed down the bars- the stuff about your choices that hinders rather than helps. All the stuff that is just part of the deal, and goes along with the decisions you've made.

And me not being able to hang with you or babysit your kids fits into that 2%. It's not about fault - because I'm not trying to BLAME anybody for having animals or stairs or whatever - but it is about getting the fact that I am NOT at fault, if you can see the difference. 

It's all in the perspective, and if I can just get people to see that I'm not saying you have to make different choices, or you have to only do things in a way that means I can participate (Because, truth? That is boring. I can participate in very few things, and would not like everybody to have to scale back to my level), but I am saying that you need to realize that your choices have consequences for our relationship, and that sometimes they will really suck.

It's seeing things more from a "well, I've got cats, so you can't come here, it seems reasonable to me that I should go there instead" kind of perspective instead of "well, I've got cats, so I guess you don't want to ever come here, the end."  It's about having a relationship with others where it's not all about me asking for things that people see as accommodations and impositions, and more about acknowledging and framing it as "hey this is OUR issue; how do we go about getting around it?"

Unfortunately, too often, the procedure in my life has normally been
  • Barrier = Can't Do/Go = People Eventually Stop Asking Me To Do Things or 
  • Barrier = Go Anyways = Get Much Sicker = That Was Really Unwise instead of 
  • Barrier = Can't Do/Go = People Help Me Figure Out A New Plan. 

Because sitting out on things is really starting to chafe, and having people assume that just asking me - knowing I can't go because of X or Y - is good enough is really getting old.

 No: it's not good enough. If you're really interested in maintaining a relationship with me, asking me to do things you know I can't do (like drive or show up at your inaccessible apartment) and saying "Sorry you can't make it!" is no longer good enough for me.

Let's figure out how to do better.

*I tried to find that post, but haven't managed it yet. If I do, I'll update with the link.