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. ;)
Monday, October 3, 2011
Monday, July 25, 2011
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!
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!
Saturday, July 16, 2011
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?
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?
Saturday, July 9, 2011
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.
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.
Wednesday, July 6, 2011
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.
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
Friday, July 1, 2011
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.
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.
Tuesday, June 28, 2011
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 =)))
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 =)))
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