Been Awhile...

Yes, i've been away a bit. Some of it was vacation (which was probably one of the hardest things i've ever done) and some of it has been that it's been a bit quiet on the front, here.

Sure, i've got new symptoms. Horrible, freakish new "what the hell are you thinking, body?!" symptoms. But at this point, that's pretty status quo. So with each time it happens, with each barrage of tests they put me through and come up with approximately zero answers, i get a little more comfortable. This is how my body is now. It's a BAMF. It does what it wants, when it wants.

So that's that. i also went on vacation (holla!) alllll by myself and came back all in one piece. =) i only got sick once, and i took my wheelchair out to the mall and cowboy boot shopping and to the restaurants so i didn't make a scene if i passed out... It was honestly a lot of work for vacation, but completely worth it. i saw so many people i love that came from so far away! People who didn't know i was sick. People who were confused about who i am now and why i'm so different. People who were lifesavers in how helpful they were while i was tending to wedding duties and such. (People who let me drive the golf cart!) Beautiful, beautiful people.

It did my heart good, no matter what the silly cardiologist says. ;)

Vanity pt 2

This deserves a post based on sheer ridiculousness.

In exactly a month minus one day, i will be traveling for the first time since i got sick. And i will be doing it alone. i will be away from my partner for 12 days, but i will be with my best friends and my adopted mother and people i dearly, dearly love so i'm hoping that they keep my heart full enough so that i don't mind the separation.

Whyyyyy am i making this trip, you ask? A very dear friend is getting married, and she asked me months ago to be in her wedding (actually, she asked me before i even had a diagnosis, it was that long ago.) Now, i hate weddings, but i love this woman, so naturally i said yes. A week from today marks the start of all the bachelorette festivities.

It's bad enough that i'm traveling with my wheelchair. It's bad enough that i will probably have to use it. It's bad enough that i will have to answer "What happened?!" approximately a bazillion times. (Is there a question i hate more?!) But i refuse to look sick. SO - here is my contingency plan for looking normal:

- chemical peels to hopefully downplay the worry lines (7% instead of the usual 40%, since my skin is crazy sensitive since i've gotten sick)
- two weeks of teeth whitening trays
- gradual, subtle fake tanning lotion (eg: not the oompa loompa stuff)
- fake eyelashes to make up for mine that have fallen out (since they're more noticeable than my hair)
- a hair appointment in two weeks to cover the gray (another weird occurrence since getting sick)
- a small arsenal of makeup to cover up the telltale paleness and dark circles
- spray on pantyhose and stage makeup to cover bruises

i have to be presentable for approximately 9 of the 12 days -- the rest will be spent with my madre, and we'll probably just sit around and read and play with the dog.

i'm worried it's going to wear me out horribly =/ But i know that seeing everyone i miss so much is something i need, too. Hopefully it will downgrade from 100-and-death degrees by the time i get down there, too... cause it's supposed to be 115 tomorrow there. Argh, i hope i'm not crazy for trying to do this!

Chairs with Wheels.

Or wheelchairs, as they're commonly known.

i am having a seriously intense love/hate relationship with my new one. i hate it for some of the obvious reasons: it automatically makes me feel approximately 80, it's bulky and i can't get some places in it, it was expensive, it's black (so what if i want to wear brown?! ughhhhh!) and people who see me in it have two choices: accept that i am sick, less capable and very unlike how i used to be... or they can think i'm doing it for attention, because from a visual standpoint, you can't see anything wrong with me.

The reality of the situation is that my body is so invisibly rebellious that i haven't been further than a 4 block radius from my apartment since we moved in. i commonly have to sit or lay while i cook dinner to keep my blood pressure in check. i can't bend down to dig in drawers or storage boxes. And i can't walk stairs anyways cause my heartbeat skyrockets and my legs go all jellylike. Not worth it.

But today, i went to the library. i went to my very favourite tea shoppe and got an iced chai. i went to Bed, Bath, and Beyond. (Nevermind the fact that my hubster popped a front wheel out of alignment not four hours after i started using the thing, because the man can't seem to grasp the idea that a wheelchair is not an all-terrain vehicle...) 

i did stuff! And yes, the view is definitely different from a wheelchair: people are nice to you for no reason... unless they're a grumpy old person, in which case they give you the stink eye unabashedly. i try not to think too hard about what other people are thinking -- why is it that was so much easier when i was younger?

Contrast MRIs

Let me start by saying i have only one phobia in life, but out of everything it is the most difficult, crippling, ironic phobia for someone with dysautonomia to have: i HATE foreign things in my body. This could mean something physical, like a needle, or a subtance, like medicine. Two years ago i didn't even take Advil. i'm the person who worries about what sorts of dye are used to colour pills, what the junk is that they're coated in, what makes them hold together... (Sidewalk chalk? Horse spit? The world may never know.) You may think this is no big deal, but it's really a true phobia: i know it's not rational, and i've had very little progress controlling my reactions, which include sleeplessness, throwing up, shaking, fainting, migraines, looking like the biggest pansy in the world...

i think i've been really good about trying to change my ways. Yes, i may waffle for days about starting a new medication because i'm so scared, and i may stare down the prescription bottle for half an hour in the mornings sometimes as my partner walks by every 10 minutes to tell me to "just take the damn thing, already" -- but those are still successes. And i realise it's in my head and that my phobia makes their job harder, but it's not like i'm trying to be difficult. (The irony of this is that anxiety is treated via medication. Hahaha, joke's on me.)

So today i had a full brain series done with a gadolineum contrast injection, and on the whole it went well. i was very very nervous about the injection, and it took a while for my teeth to stop chattering (we couldn't start the MRIs til i stopped shaking...) but it only took 3 sticks, and i didn't react to it, so hooray for small miracles. Annnnd hubby bought me egg rolls and a coconut smoothie (salt and my favourite cure-all!) And if it does show a reason for my increased dizzyness beyond what POTS normally throws at me, hopefully it won't be something horribly serious...

i just think it's so funny how both my dr and the MRI people were so worried about me being claustrophobic. And as nervous as i get about the other stuff, they just don't seem to understand that it's the same thing, just not about little spaces. Like they promise they'll use a tiny needle... and i have to explain it's not the pain, that doesn't bother me. It's physically having something in my arm. And they explain what the contrast does, etc... that's all well and good, but my body doesn't make it on its own; it is by definition a foreign substance.

...And that freaks me out on a mighty level, i just can't help it. Hopefully after this endocrinology appt at the end of the month, we will know enough to stop putting me through hell every other week for a new test.


::edit:: Holy brain fog, Batman. Typo city. If i missed any corrections, just blame it on my typing monkey. He will be duly spanked.

My Darling Doggies.

i've blogged before about how much i love animals; if you've ever met me, you know it right away. Truthfully, i'm half jealous, half in awe of how their whole existence is completely free of responsibility; they're not accused for causing car accidents or premeditated murder or racketeering. They're wholly innocent, and a completely blank slate: they learn what they're taught.

They also have amazing instincts. i'm not sure how they know when i need fuzzy little hugs, but they do. Especially my little one -- since i've gotten sick, she's hardly left my side. She won't leave me during the night when i'm awake, or during the day when i sleep. It's gone as far as having to put a water bowl for her on my nightstand, because she rarely strays to the kitchen for a drink and has gotten bladder stones because of her small fluid intake. (No worries, we had them out and she's right as rain again, silly dog.)

Right now her tiny little nose is pressed against my right elbow; every time she takes a breath i feel that tiny little puff of humid air. When i stumble from the couch to the bathroom to pee, she follows, waiting patiently in the hall. (Or not so patiently -- she's sure to flop onto her stomach and sigh to let me know if i'm taking too long, god forbid.)

She's equal parts amusing and overbearing, but she's pure comfort; i honestly couldn't make it another day without either of them.

my tiny furbabies

Something-ism.

Now, everyone has their flaws -- i am no exception. i wouldn't call myself racist or sexist or anything like that; my prejudice, like my illness, is something very obscure.

i... am a professionist.

By this, i mean i judge people based on what they've chosen as their field of work. It's absolutely rotten i know, but i can't help it -- it probably has something to do with the fact that i've had the absolute most incredible jobs ever, having been in theatre. Perhaps i'm a bit of a snob. (i worked with Indiana Jones... how do you go back to the real world after that?!) Seriously. Finance? i'm already asleep. Chemistry? Menial and out of touch.

But the worst, worst, worst of all... are dentists. Why in god's name, WHY would you ever want to be a dentist??? It takes a special kind of sadist, i think... i don't mind a good sadist every now and again, but i have always hated dentists with a passion so deep that not even i fully understand it.

Now the story reallllly gets good: i broke a tooth, so i had to land an emergency appointment this morning. (Keep in mind that i would rather cut off my own arm with a rusty spork.) So i march down to the office shaking and sleepless and not in any way excited... and lo and behold, the prettiest dentist in the whole wide world greets me in person at the door. She sits in the waiting room to chat with me about POTS and my concerns and needs. She gets me a cup of water when i drained the bottle i had brought with me.

Let me reiterate: this beautiful woman, who once upon a time said "When I grow up, I will be the handmaiden of Beelzebub himself and become a dentist!" sat down and was totally human and helpful -- i got more face time with her than i have gotten with most of my doctors. And miracle of miracles, she stops talking when i talk! (My cardiologist does not do this. It worries me.)

i'm finding it hard to hate her... my mind is blown.

The Pursuit of Beauty

My name is Buffy, and i have a problem. i am vain.

And for the record, i don't just mean vain. i mean VAIN. i spend time picking out the perfect colours of makeup for my skintone, the most specific skincare products, the most luxe bath accoutrements. i enjoy pampering myself, and it's nothing to spend an hour getting ready to go somewhere.

Or it used to be like that, anyways.

These days i can only attempt a bubble bath on the bravest of days. It has to be cold outside, or else i'm sure to overheat. My partner has to be home, just in case i overdo it and pass out in a full tub. If i do take a bath, it has to be the only endeavour for the day because it wipes all of my energy -- so no hair or makeup. (Which is fine -- i usually tumble into bed.) So 99% of the time, that means it's a shower day. If i wash my hair, i have to take a break, and then i can either blowdry OR style it because raising my arms for that long makes my blood pressure crazy and i tank out fast. (Usually it gets blowdried, and the second day it gets styled.) 

If i've taken a bath and blowdried my hair, odds are i won't have energy for makeup -- that usually happens the second day as well, and it's usually only a cursory application from my perch in bed: blush to downplay any resemblance to the living dead, concealer to hide the perma-circles, mascara to fake a state of alertness, and sometimes lipstick because i always need the colour these days... and truthfully i was raised Southern, and Southern women do not check the mail without their lipstick in place. (i may be sick, but old habits die hard, y'all.)

On top of this, every so often i have to douse my hair in the strongest old-lady colour i can buy, to hide the ever-increasing patch of gray at the front. (Wth hormones?) I have to shave my legs semi-regularly, because (a) i get paranoid that my partner will eventually begin to dream of Chewbacca when he cuddles up to me in his sleep, and (b) if i don't, it looks like a Chia pet stuffed into cheap pantyhose when i go to put on my compression stockings. Of course, i have a lot of leg, so you can imagine the energy stores this takes.

i don't mean to bitch, i just feel the need to paint a picture to the people who can do this every day before working an 8-hour shift. When you take it for granted, it's easy to miss how hard it is for people who have certain limitations. But enough of that, back to how vain i am:

Today, i managed some of this: i faked a hairstyle with extensions and a ponytail, and i spent time in bed with my full makeup kit. And i updated my Facebook photo with a picture i actually like. This is accomplishment enough for me at this point, i'm slowly learning to celebrate even the tiniest of victories -- but i've had friends comment on how cute it is, and thanks to my vanity (which is quite possibly the only part of me that is not sick) i'm in the clouds. =) i may be sick, and i may have purple feet just out of frame, and i may have taken a 2 hour nap after the exertion of all that face-painting... but i've still got it, if even just a little =)))

Happy Pride!

Gosh i love Pride weekend =)))

And thank god i'm not the partying type, or the fact that i can neither drink nor trust my BP enough to take an outing would really bother me. (Actually,one of those bothers me anyways...) But lucky for me, i live on the parade route so the hubster set up a nice little folding chair for me and i got to see most of the parade.

Don't get me wrong, i love boobs and drag queens as much as the next queer, but my favourite part of the day was near the very beginning of the whole shindig, and (shockingly) didn't include pasties.

There was an SUV with softly tinted windows, and the most precious old lady sat in the passenger seat, and out the window she dangled a sign written in rainbow-coloured letters: "I'm 90 and I'm proud of my daughter-in-love." 

i admit it. i totally teared up. i mean, i'm proud of my dogs when they poop on the grass and not the sidewalk, but i guess it's not really the same thing... anyways, it was beautiful. Happy pride, all ♥

The Opposite of Elation

So i've just booked an endocrinology workup... and i'm terrified, no joke.

Let me first say that the worst thing about dysautonomia is not the nausea or the headaches or the limitations that come with it (though those are certainly significant, and probably win second worst) -- it's the lack of knowledge about it. And with that lack of knowledge comes an overabundance of testing, because they want to know evvvvvverything.

This new appointment has me shaking in my boots because (a) it is an all day affair. Literally 8 am to 4 pm, and i'm allowed no food or medicines. (b) It is an unknown variable. i have never been to an endocrinologist, and i have no idea what sort of fresh hell it will bring. i probably have approximately a million blood draws to look forward to, which is unfortunate since my veins are just ridiculously tiny. (No, really... the phlebotomist who moonlights at a detox center says they're worse than crack addict's, and my cardiologist, whose specialty is infants, says they're worse than a newborn's. Joy oh rapture.) And i keep telling myself it can't possibly be thaaaaat bad, but i've been proven wrong so many times it's not even funny.

On top of it all, i'm reacting to the Midodrine, and so they want to put me on fludrocortisone... which i do not want to do. (Honestly, i'm dangerously close to a temper tantrum over this whole carousel of meds thing...) And my cardiologist wants to see me before that happens, which is ridiculous -- why do i have to travel an hour out to her to discuss medicine? The phone was invented several decades ago. Call me and save me the two days of subsequent exhaustion, please. Especially because i won't be on any meds at the time.

And now i have an entire month of anxiety to add to everything else. i woke up two hours ago, but i think i need a nap =( Especially before this gets any more rant-y than it already is.

A Tangential (but no less important!) Rant

i HATE how we as a society have made a commodity of animals.

You could argue that we do the same thing with women, but that's not what this rant is about. This rant is about animals, dogs in specific, who have unfairly been cast as a status symbol, and about the ludicrous and barbaric process of breeding designer puppies. (A note: i don't mean all breeders. While i would never personally buy from a breeder, i know there are some who care for their animals extremely well. This is not about them.)

Any time i open Flickr or Photobucket or what have you, there are all sorts of photos of tiny dogs -- dogs in cages, dogs in piles, dogs in purses, dogs on pillows, etc. While all puppy mill-esque supply and demand dog breeding sickens me, teacup dogs make my blood boil. (Granted i was nauseous before this, thank you POTS, but don't think that explains it.) These dogs are bred so small that any care for their wellbeing goes out the window, since freakishly small dogs =  more money. Nevermind that their diminutive frames become prone to all sorts of problems, eg: joints not developing correctly. These breeders become so ensconced in quantity over quality, again because it equals more money, that the dogs receive little to no care medically or socially. All because society has come to believe that an animal is no more than a trend. Excuse me while i vomit.

Celebrities (again, not all of them) are especially guilty of perpetuating this trend -- how often have you seen Miley with her dog of the week? (She must have like 10 now?) Or Paris with her signature chihuahua? But we as a general public DO have brains. And consciences, supposedly. Owning a dog should be associated with responsibility and a unique bond... not the following of a fad.

This isn't a post to tell you to go vegetarian or learn to talk to apes or join PETA (because in fact, i think PETA is little better than Satan's secretary...) because let's face it: even my own ego is not inflated enough to think that anyone will take my internet advice. It is, however, a blog to say that i find it completely appalling that we let this trend continue when we could choose to reverse it. That's all.

Why Youtube is Essential to the Living of My Second Childhood, or "Buffy Darling's Adventures in Slumberland"

At 4:17 in the morning, the options for entertainment are limited. (This, of course, is my tactful way of saying that there is piss all to do.)

Lately the already-elusive sleep faerie (far less creepy than the Sandman, yeah?) has been avoiding me like the plague, so i've been forced to entertain myself for hours on end:
- i've covered crafting, which i normally need a break from after half an hour due to either posture or eyesight concerns.
- i've covered reading, but again if my eyesight is wiggly then all i end up with is a headache, not to mention the list of books that i would allow myself to read alone in the semi-dark in the wee hours is a very short one indeed...
- i've covered the Wii, but damned if half of those games aren't akin to running a marathon! i don't have that sort of energy these days...
- i've certainly covered trying to talk myself into going to sleep. (You see how well that plan works? Mmhmmm.)

My current favourite strategy is hunting down all the best children's movies on Youtube or Netflix. i don't mean Peter Pan (though god forbid anyone ever insinuate that there is an occasion the Pan is not appropriate for. i will cut you.) but more obscure titles.

"Little Nemo's Adventures in Slumberland" is a classic. Who doesn't love a flying squirrel? "FernGully" is precious, and isn't nearly as scary as my 8-year-old self once believed... John Denver's original Christmas special with the Muppets is really for any time of the year, especially when you're trying to forget the 80 degrees outside your own window. "The Argon Quest" is one i'm still searching for, it involved Muppet-like puppets and live actors, and i think it was made by Feature Family Films.

But i think Sesame Street's "Don't Eat the Pictures" is one of the best. The Sesame gang gets locked into the Met, and Big Bird helps the ghost of an Egyptian prince become a star in the sky. (Cookie Monster takes a page out of my book and focuses on not eating everything in sight.) It does leave questionable lyrics floating around in your head for some days after, though...

i know i'm far more excited than i should be about Sesame Street. Blame it on my wonky blood pressure, but i still don't think there's anything better to do at 4:42 in the morning. ;)

postscript:: After careful Googling, research has shown that "Don't Eat the Pictures" was a PBS special aired half a decade before i was even born. If i were a normal person who knew how to get to sleep at times like these, i'd have never stumbled across that little gem. Dysautonomia: forcing posterity to expand their generational knowledge.

Not really.

That's just what i tell people.

It's complicated. When you look like a million bucks (ok, i may or may not be exaggerating...) and someone asks you what you do for a living, be it over dinner conversation (usually in my dreams, since a successful dinner these days is one that does not include popcorn,) or on a form, sometimes it's just worth it to skip the whole "sick" issue altogether. Let's call it "therapeutic ignorance."

Truthfully, i'm twenty three and an extremely skilled ex-artisan; i hold a college degree and used to read the dictionary for fun (my Words with Friends ability should be off the charts, truly.) But when dysautonomia creeps into your life and sets up shop, it changes who you are. So many people will tell you it does not, but it does: it changes how you interact with the world, how others see you, and how you see yourself. It doesn't matter if you were a rocket scientist or a stripper (though i was neither, officially) -- now you have days where you can't face the physical exertion of a shower, let alone a blow dry, and are reduced to nibbling Poptarts in bed between naps and stomach sickness, relying on the thorough greediness of your tiny dogs to catch any crumbs you may drop. (Granted, these are the worst of days; most days i can be found with wet but clean hair, and a Toaster Strudel instead of a Poptart.)

Trophy wives do not invite pity. "Homemaker" is not a label i like, because it insinuates a home that needs taking care of: children and the like, which we are thankfully free of. i don't even have plants; my home is deliciously carefree. "Stay at home dogmother" is one i use on occasion, though only in the right company; some people just don't understand the compulsion to dress up small animals in jumpers and Wellies. "Disabled" is one i can't bring myself to use in company, so it's right out -- "trophy wife" it is.

Of course, after half a second spared to look at me, the whole label seems ridiculous, and usually gets a good laugh. And you know... i'm ok with that. ;)