Kickstarter is uuuuup!

Go see it here! (!!!)

twitter-mermaid-monofin

Tomorrow (Thursday) at 11:59pm I’ll close the contest for the free mermaid tail and monofin and draw the winner-winner-chicken-dinner, and announce the lucky duck on Friday, at which point our website will also be live for the ordering of insanely discounted mermaid tails and swimming suits, because what is a launch without a bargain?

mermaid-tail-store

If you signed up at Sun Tails you’ll get a hyper-sounding email around this time. It should go out now, but I’ll wait until after I have a contest winner to announce.

I love you all, please share this Kickstarter campaign like crazypants.

Drumming, drumming

It took three days for my face to deflate, but I am happily back to normal. Huzzah. I also may have tossed all the aspirin in the house just in case.

Actually, let’s not beat around the bush. I totally dumped it down the toilet. I had an insane headache (Again! with the headache! This can all be blamed on my head!) and reached for the NOW FOUND Tylenol only to find that I was popping the lid on the EXCEDRIN BOTTLE. The Excedrin bottle which contains the face-swelling aspirin. In my defense, the bottles (both generic) were of similar size and color. So yeah, I flushed it.

Not the Tyelenol. (I had to go check again just to make sure. #aspirinparanoia)

So! My Kickstarter was supposed to go live yesterday and you guys, for probably the first time in my LIFE, I was ready. Actually, factually ready. ON TIME and everything. But guess what?

account-verification

There’s this part where Kickstarter has to do due diligence and try and make sure that you aren’t a huge criminal out to steal everyone’s hard earned pennies. I knew this, but did not anticipate it taking longer than five seconds. Or maybe five minutes. But because I’d recently moved and my driver’s license address didn’t match the address my bank has on file for me, it took an extra day. Although, now, hooray, please notice:

approved!

Happily, I am not a hardened criminal out to steal your hard earned pennies. Double huzzah!

tobias-huzzah

The other thing I didn’t realize (which I’m seriously amazed by because I have basically read the entire internet on how to Kickstarter — yes, it’s a verb — and yes, I did a parenthetical inside another parenthetical) was that Kickstarter’s review process can take another day or two.

OR A WEEK (my project is a design project, AV COURSE).

a week!

I’m sorry I’m so capsy lately. I’m sure it’ll pass. It’s like tourettes for bloggers.

So this is where we’re at. Drumming our fingers with Cookie Monster. I realllly wanted to make a Killing Me Softly reference here, you’re welcome for not.

Drumming my fingers to his pain

So, instead of doing inventory, let’s explore some way cool Kickstarter projects I’ve found:

I need a 50 pack of these:

And this is just cute. I wish it worked with old iPods, I have a few of those:

Is it wrong that I want a desk set in my size?

I backed this one, the art is just gorgeous:

I just found this one and immagonna hafta back it too:

Are you a Kickstarter-er? Wait, my verbing is falling apart. Are you someone who is familiar with crowdfunding and has participated in one way or another? I was aware that crowdfunding existed, but learning about it from the inside out has been a super educational experience for me. In digging into all the innards and bowels of it all (gross, Jessica, what’s wrong with you tonight? I DON’T KNOW.) I’m no longer paralyzed by the fear of failure, rather, I’m really interested to see what I learn from the process. So that’s cool. BOWELS!

Anaphylaxis & George Clooney. True love always at my small town ER.

I was an idiot and took an Excedrin Migraine last night for a bad headache. NSAIDs can make my face swell up but I’d been doing so much better, I thought I’d be fine.

For comparison’s sake, here I am the day before (images swiped from the video I’ve been working on):

TWODAYSAGAO

Aaand here we are post-stupid-NSAID-taking. The cheerful one on the left was last night around 10? I was still in the, “Oh ha, ha, this was a dumb thing to do!” stage. Facial swelling is stupid and lame and I’D RATHER HAVE HIVES, but it usually passes in 24 hours without too much of a fuss.

these will evaporate before they can be included in some reddit meme about sad online dating profile photos.

These will evaporate before they can be included in some reddit meme about sad online dating profile photos. Hi, I love cats and still wear mittens with the strings attached. Call me.

The one on the right was taken this afternoon after I got home from the hospital because the swelling spread to my throat (laryngeal angioedema) and effecting my speech and breathing. It’s frightening, even for one so seasoned in the world of, well, this:

archibald-snatcher-histamine-angioedema

I know! Finally, a screencap of one Mr. Archibald Snatcher. It’s perfect.

Right, so my visit to the hospital this morning at 5am was a bit of a circus sideshow. I thought I’d share some highlights.

I present at the front desk of the ER and say as clearly as I can, “anaphylactic,” and hand the receptionist my ID and insurance card.

She is alarmed, as one usually is, by my distended appearance, and glances unhappily around at the empty waiting room as if looking for someone else to handle the exploded-face lady. She reluctantly picks up the phone to the back. When a nurse picks up she glances down at my driver’s license and says, “Oh, um, yes, I’ve got a woman up here, she is saying… Anna… something? But her ID says Jessica?”

This does not bode well. I try to speak more clearly pointing at my face, “Allergic reaction – anaphylaxis?!” But it only comes out a hoarse whisper. I sound rather like if Darth Vader and Chewbaca had somehow spawned a severely asthmatic baby together. It should be somewhat obvious that it’s an emergency.

Darth Vader Chewbaca trombone duel

She only gives me a worried look, and into the phone says, “That, um, ana thing?” She gestures at her facial area helplessly.

I rasp out “Anaphalaxis! My throat is closing up!”

anaphylactic

The nurse asks her something else through the line, and the girl asks me, “Um, are you short of breath?”

Serious head-desk moment. Guys. I sounded like this:

My swollen face does not register the facial expression known as “Um, duh?” so I just nod. The nurse says something else, and the receptionist looks to me again and asks, “Are you struggling to breathe?”

At this point I’m eying the swinging doors to the ER thinking I ought to just make a run for it. I’m holding my head back at an angle because it lets more air in, and I’m starting to make snoring noises on the inhales. I mean what if my condition was even slightly more serious?

Half ignoring her, plotting my break-in to the ER inner sanctum, I say, “Angioedema?” thinking maybe the syllables will be easier for her to decipher from my puffy lips. I’m scooping up my purse and turning towards the ER when the nurse comes running through the double doors. I couldn’t see her super hero cape, but I’m sure it was there.

The nurse shouts, “ANA-FAL-ACK-SIS” to the receptionist as she grabs my arm and hauls me away. She says with an apologetic smile, “I finally made out what you were saying and ran for it. Nobody knows what angioedema is unless their face blows up regularly.”

The nurse flings me into triage and slaps a stethoscope on my neck and a pulse-oximeter on my finger. She eyes me critically and listens to the wheezing. “Okay, you’re getting air. You aren’t blue yet, though very pale. Your blood oxygen is not great, but okay, we’ve got this.” She smiles encouragingly as she slams a shot of epinephrine into my shoulder and I immediately start to shake all over with the adrenaline.

I’m pretty much on an episode of ER. Where is George Clooney?

GEORGIE

Super hero nurse shouts to someone, “Start a line, please, and call pulmonary for a epi nebulizer!” And people are running about like she is the super-rad-boss-lady of boss-lady-nurses everywhere.

After the epinephrine nebulizer my throat opens up pretty quickly (hooray!). I can breathe much easier, and my blood O2 levels get back up into the mid 90s. I still can’t talk very well though. The nurse tells me a doctor will be in in a minute.


Doogester

The doctor is twelve. Well. He looks twelve. I realize this means that I am officially old. He has a student lab coat on and when he speaks he has really prolonged pauses between each word. I start to feel like he and the receptionist out front ought to run away together. (I know, I have no room to talk, I sound like a smoking bronchitis patient at this point.)

He asks me what I reacted to and I try to explain that I have Chronic Idiopathic Urticaria with Angioedema, but that it’s on the mend, and I mistakenly thought it’d be all right to take an NSAID for a headache last night.

I know we are in trouble when he doesn’t appear to know what any of these things are.

He asks, “So…. you…. always…. react…. to… what?”

There is a lot of really painful back and forth. Me trying to explain chronic hives and aspirin and him thinking first that I’d been permanently swollen since 2010, and then permanently swollen only since August. Boss lady nurse came back and tried to help him out and explained chronic hives and the NSAID connection… and also what NSAIDs are (oh dear).

Someone needs to crown her president of the hospital.

Aren’t these students supposed to have a grown-up doctor helping on rounds? Explaining? Or, you know, knocking their heads together sometimes?

S.C.R.U.B.S.

He was probably putting his feet up in an office somewhere knowing the super hero boss nurse lady had everything under control.

A different doctor comes in a little later. He is also in a student lab coat and looks at least 17, so we’re on our way up, my friends. He could speak normally though, so we (me and my face) called that a win. HOWEVER he lost points because he asked me if I’d seen an allergist after I explained my CIU history.

OH GEE NO, I’D NEVER THOUGHT OF THAT NOT EVER. WHAT IS WRONG WITH YOU.

In the very center of a bingo card made for people with CIU is a square that looks like this:

Urticaria and Angioedema Bingo

It’s similar to the one for hyperemesis in which the middle square reads “HAVE YOU TRIED SALTINES?”

I try to smile with bratwurst lips and say, “Oh honey,” (I can say that because he is a baby and I am a gray haired beach-ball faced lady) “Yes, I’ve seen loads of specialists. I have no clear triggers other than aspirin which I thought was safe to take and it clearly wasn’t.”

So he leaves and I try to take a nap, having now been awake for 20 hours straight. I couldn’t sleep — of course, who can in a beeping, whirring hospital? — so after a few hours I sit up and ask to go home.

After a bit more poking and prodding, I am allowed to depart with a big packet of information about all of the stuff my student doctors maybe need to read for homework. I go home, hug my babies, fire up a movie marathon for them, and sleep.

I decided I needed to send a pie to the boss lady nurse. It is Pi Day, after all.

I’m still swollen, but my voice is slowly coming back, and I can breathe. Big thanks to my Instagram peeps for giving me a shove to go. I’m glad I did. Having your throat close up is scary, and though my face has been WAY bigger, that was the worst throat-swelling, ever.

Oh and hey! Keep plodding along, student doctors of the world! Don’t let me get you down. CIU isn’t exactly super common; no hard feelings. Though, seriously, front desk lady, anaphalaxis IS. Read up! Maybe tape the picture of Archibald Snatcher to the desk area with the words: “THESE PEOPLE GENERALLY CANNOT COMMUNICATE AND NEED MEDICAL ATTENTION ASAP. ANA-FAL-ACK-SIS!” Then, all of you have some pie, I bet the boss lady nurse will share, because she’s clearly made of awesome.

p.s. I tried, IrishMum, I tried. When is your birthday? I hereby pinkie promise to post a single-paragraph (maybe two!) on that day.

Being authentic

When I finally decided to take a leap and head up Sun Tail Mermaid, my business partner and I initially structured the operating agreements so that my identity could remain hidden. Not because we thought we were doing anything wrong, but because I didn’t want to make things awkward or uncomfortable for anyone that knew both myself and the individuals involved with the other company.

Sensitive Species

But, as I’ve mentioned, it was soon apparent that we’d need to patent my monofin. But how to do it? Could you patent a product in the name of a company? Yes, but the inventor’s name was required by law to be on the documents. Documents which would eventually be public. Couldn’t we patent it in someone else’s name? Sell them the idea, but retain the rights? Too risky, and pretty unconventional besides. My patent attorney was baffled. Never, ever, had she come across any inventor not wanting their name up in the big lights, so to speak.

Yes, well, how do you do? My name is Jessica and I want the spotlight exactly zero.

We were also discovering it would be more challenging to launch a business without even being able to utilize our own personal and professional networks. Coming out of the closet, so to speak, was becoming more and more important.

I’m somewhat ashamed to admit that it all created quite the existential crisis.

Panic button

This is navel gazing at it’s finest, you guys. But here goes.

I was rather loud and obnoxious and spotlight-loving in high school. I was in the drama club, for crying out loud; where the goal was, to literally be on a stage under a spotlight. It makes my throat close up to even talk about it now.

And my friends and I regularly did really stupid attention-grabby things. Amber and I would rig our backpacks to split, and then have an ocean of tampons and maxi-pads spill from the slit in the middle of the hallway, then kneel scraping them up and shoving them back in, acting embarrassed and purposefully bonking into people and generally causing havoc. Or we’d spray our crotches with water before we went on stage to make an announcement at an assembly.

spartans cheerleader

I might on-purpose tuck a long stream of toilet paper into my panties and let it trail behind me in the crowded school halls like it had gotten stuck there whilst in the loo. Sheelagh gave me a fart machine from Spencer’s Gifts in the mall, and I’d let it rip during a history exam, then watch gleefully as students hastily scooted their desks away from my person, disrupting the class and annoying the teacher.

After more idiotic antics at college, I moved away and became involved with a manipulative freak-show of a human being. To put it bluntly and succinctly, it was a scary, twisted, nightmare of an abusive relationship and when I finally emerged three years later, I felt like an empty shell.

My high school years seemed horrifying from this new, broken vantage point. More so, I think, than most, because I was so over the top. I mean, who isn’t at least vaguely embarrassed by their teen years? But I’d gone from one extreme to the other and couldn’t tell where I was supposed to land. I wasn’t comfortable with the pre-nightmare persona, and had no idea who I was post-nightmare either. It seemed the only answer was to clam up and observe.

This clamming up became quite a comfortable place to be.

Go away, I'm introverting

Twenty years later, I was sitting in my little office contemplating what, exactly, I was so afraid of. My health, after steadily improving had taken a nose dive as I tried to gird my loins for the mermaid-out-of-the-closeting. I’d burst into tears trying to put my real name on Facebook. I couldn’t do it.

I finally faced the fact that some of this old, moldy baggage was still mucking about in my heart and brain spaces.

This was alarming. I am not one who enjoys lying on a psychiatrist’s couch marinating in the past (no offense to those of you who do). I had no desire whatsoever to contemplate endlessly, my formative years and analyze them under a microscope in order to sort out what might have led to what, and why I now identified so strongly as a quivering, little brown church mouse.

Baggage Dept

So I mulled things over. The then, the now, the in between. And thankfully with only a handful of phone calls to my lovely mother and without too much introspective headache, I realized something that is probably quite clear to you already — it was something I already knew on some level, but just hadn’t connected all the dots.

The crazy personality in high school was a form of armor, because of course it was. It was safer to construct the embarrassing situations myself rather than wait for one to come along and surprise me. I’d had too many rejections and mortifications in elementary school and junior high, so this way, I was in control. I laughed at everything (and I do mean everything) as a way to show that my status as misfit didn’t bother me. And if people didn’t like me, it didn’t matter, because I wasn’t being real with them anyway.

245/365 - Never let your guard down

It likely wasn’t much different than any other coming-of-age survival tactic, a variety of which I’m sure are regularly deployed in institutionalized learning environs the world over. From the goths layering on a thick coat of “I don’t care,” to the jocks with their hard, shiny veneer of toughness – we were, many of us, just shielding and protecting ourselves from the various horrors of high school (and life in general), no?

These were things I already knew. But what was a bit more of a revelation was the fact that I was still toting around some fairly heavy-duty armor in my grown-up late 30s. Only it was of a different sort. I know, right? Duh, everyone says.

Armor complete with a vast moat; thick, impenetrable walls of stone; and a drawbridge, tightly drawn. It’s a wonder how my small band of friends ever managed to survive the crocodiles and various man eating fishes to forge across and batter through.

I should clearly order this book straightaway.

I should clearly order this book straightaway.

Recognizing this made for quite a significant paradigm shift. I wasn’t really all that afraid of potential feelings or sticky relationships, I was simply afraid to put myself out there; to be authentically me.

It was an uncomfortable thought to consider that my cozy, agoraphobic, hermity ways might not be entirely the true me. I decided if I deconstructed some of the bullet proof glass and bomb shelter walls that made up my comfort zone, I’d maybe find a happier, more self confident person inside. Or at least one unafraid to stand up and say, “Hey, I made something rad. I think you might like it. And if you don’t, that’s cool.”

Stuart Smalley would be so proud.

An ancient SNL skit for the uninitiated.  The inimitable Stuart Smalley.

After all, the painful years of youth are long since past, and certainly no one on Facebook (I finally braved it, thank you) gives a rat’s banana what I may have or mayn’t have been like over two decades ago.

Oy, the navel gazing has turned into outright belly button lint gathering*, so I’ll sum up. It turned out that merely discovering and acknowledging this whole armor wearing thing was more than half the battle. I am definitely, and authentically still very much an introvert, but I’m a braver and more courageous one, and I’m not ashamed to say this has been my theme song of late:

I promised no more to-be-continueds so I won’t say to be continued… I’ll just say that perhaps I’ll write more on this subject should the fancy strike, mayhap at some loosely defined appointment in the foggy future.

*Do not, I repeat, do not search Google images for belly button lint sculptures. I am going to need to vomit.

March health update: I’ve stopped fainting

I haven’t passed out in over a month! All that quiet non-jinxy woo-hooing paid off. I even went to the store last week and was able to walk (albeit leaning on a cart) without using the beep-beep cart! When the checkout person asked me how my day was going, I was hard pressed not to jubilantly shout “SUPER GREAT, I AM WALKING ON MY OWN, HOW ARE YOU?!”

apologies-to-allie

(Apologies to Allie.)

POTS can go into remission and then come back without a lot of warning, so I’m not holding my breath that the fainting episodes are gone for good, though I sure hope they are.

My hives are also getting better, though still very much around. I hadn’t been swelling in the face much, but last week made up for it. I think I woke up with some facial area swollen every day, and on one day it meant that I had to go to the pool to shoot some underwater footage with a face that resembled a chimpanzee, no offense to chimpanzees.

This video has that footage. My swollen face is not in it, though. (You are welcome for that.)

When my upper lip is swollen, it makes the space between the bottom of my nose and the top of my lip longer. It completely changes the way I look and it’s pretty alarming. It’s something I noticed celebs who get lip injections get… a longer upper lip:

Screen Shot 2015-02-09 at 2.21.20 AM

I can’t understand why anyone would do it on purpose. Anyway, the swelling seems to be calming down quite a bit, so quiet hooraying!

So… let’s see, in my last health update I told you we were investigating female hormonal imbalances, but everything came back normal.

However! We did find out my pituitary gland was not doing so hot. Despite my T3 and T4 thyroid levels being quite low, my pituitary gland was not secreting any TSH (thyroid stimulating hormone) to tell my thyroid gland to produce more. Remember this guy?

po-ed-pituitary

Yeah, he’s just decided to take a nap instead of shout.

So I’m on some new supplements that are supposed to nourish my pituitary gland (This is a thing? That is possible?) and also a new iodide / iodine supplement in an attempt to bypass the tired pituitary and stimulate the thyroid gland directly (This makes more scientific sense).

It’s been a month or so on the new protocol and I am about to go in for more thyroid tests to see if it has helped. I certainly have felt more energetic, so I hope we’re on to something. If it hasn’t helped, it’ll be time for thyroid medication again.

My iron and potassium levels are finally up in the normal range, so that’s also helping my energy levels. It’s so hard to know what might really be working / helping, and what’s just voodoo, but I’ll just be grateful for the upswing.

So, that’s about it. No more bed rest, and I’m pretty functional. I think being happier with my work situation helps a lot. I continue to make good progress with my exercise protocol (largely Yoga with Adriene), and should be greenlighted to try swimming laps again soon. Fingers crossed!