Keeping up with the POTSies

Before I begin, I’d like to call your attention to the pretty new format of this site. I realized that in order to get back to the first posts, you had to scroll forEVER and that it was really annoying and cross-eyes inducing. Sorry about that, it’s all better now! Also, in case you missed it, the web address is now just www.iamchronicallywell.com, with NO .wordpress included. It’s easier to tell people about this way!

Ok, I promised something completely ridiculous and un-heavy for your Monday reading pleasure so here it goes…

What exactly could be more ridiculous and un-heavy than a bunch of POTSies hanging out in the wilds of <NorthernPartofaSouthernState> for the weekend?

On Wednesday and Thursday of last week, some pretty major thunderstorms rolled through my area, so I was not a happy camper. It was not my idea of a perfect date (see June 27). Headachy and cranky is not the way to go into a weekend-long conference. So I played some Lady Gaga really loud (ok, it wasn’t that loud, but it was loud to my achy-breaky brain) and I shook the woogey-boogeys out because I had to pull myself together(ish).

So, the ridiculous: nobody feels particularly well at this conference. Also, most of our conversations take place on the floor, sometimes lying down with our feet above our heads resting on the wall.

The un-heavy: none of us care!

Finally, finally, after <some amount of time> of waiting, we have found our POTSy soul mates.

There are organized chats and fancy dinners and even a dance (as most of us missed out on school dances- the average POTSie gets diagnosed somewhere between age 11-21). There are trips to the local grocery store, which is probably bigger and better than the grocery store you have at home. Sometimes people get really wild and go to the mall.

But mostly, we sit around and talk about the wonderfully weird and slightly out-of-the-ordinary medical condition that has brought us all here together. And when we get bored of swapping notes on how to exercise when your heart feels like it’s going to explode (it’s best in a recumbent position- woohoo rowing machines!) or what to do if you start to feel woozy in a public place (sit down immediately-even if it’s in a random aisle of Walmart!), we do something really nutty…

We talk about what movies we like and what our dogs’ names are and how that color of nail polish looks super good with that bangin’ dress you’re wearing.

Like they tell us normal people do.

And, if someone starts to feel symptomatic or faints, we simply fill them up with H2O, prop them up against the wall, shrug and continue.

In short, we get to be our own very special kind of normal, and it is fantastic.

This is the 6th year I’ve been a part of this group, and the 5th time I’ve been to this conference. I get referred to (affectionately of course!) as an “old-timer” which does not make me feel nearly as old as I did when <thesweetest14yearoldgirlever> told me that she wasn’t dancing to “Everybody” because she wasn’t familiar with the Backstreet Boys and in fact, she doesn’t even think she was alive when that song was popular. I quickly excused myself to double check for wrinkles and gray hairs in the bathroom mirror. Also to cry a little.

ANYWAY.

I’m an “old-timer” because I’ve been around the POTSy block. I’ve tried nearly every medical intervention, seen every kind of specialist, and have attempted to “make college happen” every which way possible (school is a very popular topic). It makes me feel so wonderful when I can take all that stuff (it’s in italics because I’m not using the word I really want to use there) that I’ve been through and share it with someone else. It makes me feel even more wonderful if my share means that the amount of stuff they have to go through becomes a little less painful. Everyone is trying to figure out how to make their life experiences meaningful in some way, and it’s at conferences like these that the fact that you went through stuff you might not talk about anywhere else gets to mean something, maybe for someone else. That’s pretty awesome.

It’s also pretty awesome when you get to play crab-walk soccer:

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And Giant Jenga:

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*Tiny formality: I picked these two photos because the faces were blurry, to protect POTSy identities. Because, you know, we are really secret agents and I wouldn’t want to blow anyone’s cover =)

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John Green makes me emotional. Deal with it.

I recently devoured, I mean read, The Fault in Our Stars, the wonderful novel by John Green. It’s just been made into a movie, too, which I have yet to see, but would love to. The book was so beautiful, telling Hazel Grace’s story of meeting and falling in love with a boy named Augustus, all while dealing with cancer and the never ending quest to get her questions answered about a favorite book from its reclusive, and slightly mad, author. It’s not a book about cancer, she says at one point. I get that. Hazel wants to be the leading lady in her story. Cancer is something she has to deal with; it isn’t her whole identity. I loved that so much about her character.

There was a lot I admired about this book, and a lot that I was surprised to find that I could relate to. POTS is not fatal, and it’s not that I was comparing my condition to Hazel’s. It was more about the similarities of being a “sick kid”, and of the familiarity of the experiences and situations she describes. Something that really stuck out to me was this:

Starting at the end of page 211 until page 213 (hardback edition), Hazel discusses Maslow’s Hierarchy of Needs:

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Having taken Intro to Psych, I had some vague knowledge of Maslow and his pyramid, but I don’t think I ever paid much attention to it before I read Hazel’s assessment. She says about the hierarchy:

                           Once your needs for food and water are fulfilled, you move up to the next set of needs, security, and then the next and the next, but the important thing is that, according to Maslow, until your physiological needs are satisfied, you don’t even worry about security or social needs, let alone “self actualization,” which is when you start to, like make art and think about morality and quantum physics and stuff.

                           According to Maslow, I was stuck on the second level of the pyramid, unable to feel secure in my health and therefore unable to reach for love and respect and art and whatever else, which is, of course, utter horseshit: The urge to make art or contemplate philosophy does not go away when you are sick. Those urges just become transfigured by illness.

That last bit digs into my brain. She is so right.

Maybe Maslow’s hierarchy works for some people. Maybe it works in a really broad and general sense. But for me and Hazel, it’s all out of whack. We may be stuck in the second level, insecure in our health in our own ways, but we’re not empty inside. Our bodies may be eternally stuck in some form of “survival mode”, but our minds are not. Although my needs may be “transfigured by illness,” they are still alive and well.

I need to be social. I admit I’m not the best at this. I want more than anything, to be a “Yes!” person, to be able to make spontaneous plans (or really, any plans at all), but my illness gets in the way. But being holed up in what I affectionately refer to as my “Hobbit Hole” (read: my house), doesn’t mean I don’t feel the need for other people’s company. I find ways to reach out, namely through the Internet (like right now!) and sending cards and small presents to my friends to let them know I am thinking of them. My health situation might be dead center in my line of vision most days, but on the periphery, I see others. My social circle may be small, but it is made up of such gut-burstingly fantastic people who take my efforts and return them with an “I see you, too.”

I need self-esteem and accomplishments. I’ve had disappointments in this area, I think everyone has. For a long time, I felt that in order to consider myself “accomplished” I needed to finish my bachelor’s degree in college. POTS has made it very clear that this just ain’t happenin’ right now. But that’s not the only way to be accomplished. What a lot of you don’t know is that earlier this year, I wrote a book. Yep, a whole novel. Those 71,109 words mean so much to me, because it means that over the course of 5 months I committed to a project, and completed it. It has a beginning, middle and end. It may not be publishable in its current form, it may not ever reach a stage where it is considered more than a rough draft with lots of potential, but it is printed out, all 271 pages, sitting on my desk, to remind me that I can still be a person. Not just a person, but a person who does stuff, even though I am often dealing with illness-related what-have-you. I’ve even started a second one. I’m just that bold.

I need to be self-actualized. Can we count this blog as my own journey of self awareness and personal growth? Because writing to you each week is leading me to sit down, think about what I want to say and how to say it. How do I share my experiences with you? How can I relate to you in a way that allows you to stand in my compression stockings for the 15 minutes you’re reading this blog? Am I just going to sit here and tell you what I did today, or am I going to also challenge myself to do something bigger and better tomorrow?

For the record, I like to make art and contemplate philosophy (#showoff). I paint, I make crafts, sew and crochet. I write (which I absolutely count as art). One of my favorite books is called “Xmen and Philosophy,” which may seem silly, but it’s easier to visualize complex topics when you insert superheroes into them. Or at least it is for me. I have not one, but TWO friends who actually majored in Philosophy in college, and every once and a while we chitter-chat about things like space and time. You know, for funsies.

I love that John Green made this conversation a part of his book, however how small or passed over it was in relation to all the other wonderful things he brought to life through Hazel Grace. She concludes by saying:

Maslow’s pyramid seemed to imply that I was less human than other people, and most people seemed to agree with him. But not Augustus.

All anyone can hope for in life, Chronic or not, is for it to be filled with Augustuses. People who see that you are a whole, well rounded person. Not <in spite of> or <for a sick person> or <while dealing with____>. Just you. As a whole. As a person.

This is my 9th post. I’ve been writing for just a short 3 weeks, but the love, love, love you are all sending me makes me feel ooey gooey inside. It makes me feel whole. It makes me feel like a person. So I love you, friends new and old, relatives who care, people I’ve never met in far corners of the world, who are all tuning in. My Chronic readers, as Sam S. gets credit for naming you (don’tbesorryforthatjoke!). Thanks for being my Augustuses.

*Sniff*

I promise to write about something completely ridiculous and un-heavy on Monday to make up for what turned into an emotional blubber-fest, at least on my end. John Green has a way of doing that to people.

Seriously. Gosh.

 

Starting back at 1

Ugh, you guys, my streak has been broken.

If you asked me on Saturday when the last time I lost consciousness was, I would have told you “I don’t exactly remember, but it’s been a while.”

It was close to a year.

I’ve been doing really well.

Until Sunday…

I have no idea what happened. One second I was fine, talking groceries with my mom, offering to go downstairs to check if we had chicken in the freezer. I remember walking down the stairs, and then I remember being at the bottom of the stairs, having landed very uncomfortably on my bottom.

But I have no idea what happened to those last 5 stairs.

Ugh, sorry, but I have to say ugh again, because I am super cranky.

This used to happen all the time. I wasn’t allowed to empty the dishwasher from 2007-2013 because if I lifted my hands above my head or tilted my head back just so, I would black out. Just for a tiny second, but enough to drop whatever I was putting in the cabinet, resulting in quite a few broken dishes. And cups. And there was that one time the plastic pitcher bonked me on the head on its way down.

You know when there’s a thunderstorm and the power flickers for just a second? It’s like that. But in my brain.

My eyes are open and from all outward appearances I look pretty normal, but something just short-circuits and I lose 10-30 seconds.

Enough to break a dish…

Or fall down the stairs…

Needless to say I don’t feel that great today. I’ve got a bruise the size of Texas in an un-photographable place (otherwise I would have posted for show-and-tell). I also had a doctor’s appointment today (convenient) to tell my rheumatologist (one of the many doctor people I see) about how tapering down my meds has been going really well (see When your meds become your frenemies, from June 20). You know, until yesterday. I also had to get a swollen finger joint drained, which is about as pleasant as it sounds so I’ll spare you the details. (In case you are keeping count, med students were called in to watch this happen, yet I still have 0 dates with med students. I really thought a swollen joint was more alluring than an upper body/face rash, but who knows with interns?)

So it’s been a little bit rough lately. But the Polymorphous Light Eruption is fading, and the biopsy came back negative for Lupus, so I’m simply a “tad” sun-allergic, which can be dealt with by investing in Costco-sized bottles of sunscreen and nifty long sleeve bathing suits (I plan to properly express my love of the “rash guard” later in the week). And the rheumatologist assures me that it is perfectly fine to think that my body is just adjusting to my medication changes, as I am also decreasing another one now that I’m fully off the one I talked about in that previous post. He doesn’t think that we have any reason to believe that my tiny, yet unfortunate-for-my-bum blackout is going to be the norm. My resting heart rate is creep creep creeping up in number, but my blood pressure is normal and stable (Yay!).

I’m starting back at one. It has been 1 day since my last loss of consciousness. My initial reaction is to be mad and curse the universe. I am doing everything RIGHT over here, Universe. Seriously. Gosh. I let myself feel that way for 5 minutes (ok, 10), because really, it’s important to validate your emotions. But now I am choosing to /Let it Go, Let it Gooooooooo/ and be /Rise like the break of dawnnnnnnnnn/ (sorry, the Frozen soundtrack had been getting a lot of airplay here lately) because it’s the better choice. I’ve done bitter, and it ain’t pretty. It’s lonely and frustrating, and no amount of retracing my steps through what-did-I-do-differently-yesterday is helpful. Sometimes you just black out.

Or, well, I do…

I feel like I need to tell you not to worry about me. While it sounds kind of scary (and it is kind of scary) to blip out like a pre-digital television occasionally, I am well taken care of.

For instance, my dog, Suki, takes her job very seriously.

Here she is, guarding me on the couch last night:

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I am the pale person with the awkwardly disembodied elbow. Suki is the small furry ferocious one wondering why on Earth we would take her picture at a time like this, can’t you see she’s busy making sure I stay put and don’t fall down any more stairs. And yes, eleven years ago I named her after Lorelei’s best friend on Gilmore Girls. I loved Melissa McCarthy before it was cool to love Melissa McCarthy.

Of course there are also people here (hi Mom!) but we all know Suki is boss lady when it comes to watching me. Which she does. In a weird, death stare sort of way.

So, don’t worry.

Anyway. I am sitting on the couch, well guarded and cared for, slowly accepting that sometimes in life you just have wipe the slate clean and restart your count. It was a good long streak, and maybe this next one will be even longer. I’m starting back at 1 this week, but now I know what it takes to get to 360something and eventually, I’ll get back there again!

My Perfect Date

I’d have to say April 25th. Because it’s not too hot and not too cold. All you need is a light jacket!

Ok, so that’s someone else’s answer…

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Today is a perfect day for me. My Iphone tells me that the temperature is 75*F, there’s a bit of a breeze, and the humidity is just under 50%.

Ahhhh, wonderful.

It’s even just a pinch cloudy, but not chance-of-rain cloudy, just the-universe-wants-you-to-be-comfortable-outside-today-Nic! cloudy.

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The weather is a highly unpredictable thing, we all know. More or less everyone and their Great- Aunt Esther is influenced in one way or another by what the sky is doing outside. Ever feel sleepy on a dark day or after too much sun? Are your knees better at predicting a chance of precipitation than the local weather man?

The weather and my personal equilibrium are tight. They are like this:

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So happy right? Well, yes, on a day like today. I feel about as happy as a clam, if indeed clams are happy (who came up with that saying anyway?).

When the weather is NOT beautiful, wonderful, blissful, semi-cloudy, low-humidity, 75*F, then the relationship between the weather and my personal equilibrium feel like this (guess which one is me):

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(Seriously, I find these things just by Googling “fingers crossed”. People have WAY TOO MUCH TIME ON THEIR HANDS-pun intended)

There’s a scientific reason for this. It has to do with barometric pressure, and a fancy thing called Boyle’s Law, which just so happens to be the only thing I internalized from taking Physics for 5 minutes (ok, it was more like 300 minutes, because I had to drop the 75 minute class after going all of 4 times #medicalreasons). Basically, pressure and volume are inversely related. When pressure goes up, volume goes down; when pressure goes down, volume goes up. This is the simple, you’re-reading-my-blog-on-a-Friday explanation**.

So on my perfect day, the pressure outside is down. This means the volume of my lungs (and blood vessels, and really anything else in there that is vessel-like) is up, so I get to fill them up with oxygen. Yay for some O2! Oxygen fills my happy red blood cells (at least the few of them I have…anemia’s no fun y’all) who then travel all around my insides and bring that helpful oxygen to important things like my brain. And my toes. You just don’t realize the importance of toes until they start to turn blue-ish and you can’t feel them.

A bad day? That means the pressure outside is up, up, up, like right before a thunderstorm. Then you better bet that my volumes- lungs, blood vessels, etc.- are all down, making it harder for that oxygenated goodness to get to all my extremities. (Goodbye toes and the ability to make complete sentences!)

Everyone feels this to an extent, yes, but for me and other Chronics, it can make or break the day. If your Chronic bestie cancels on your lunch plans last minute, take a peek outside or check the barometric pressure. Chances are it’s just that he or she is being intensely affected by forces that are really, really, really out of our control, and not that you choose weird lunch places or have body odor. (Though if it’s low pressure and perfectly moderate temperature out there, you may want to consider these things…)

Anyway, I’m keeping today’s post short because, as I’ve now made pretty clear, it is a nice day. I’m out to enjoy it. Happy Weekend, everyone!

**I just know some of you knowledgeable Chronics are itching to fill in my scientific blanks. If you’ve anything to add to the whole Barometric pressure-explanation/discussion, leave a comment!

When your meds become your frenemies

There are choice medical phrases that one never likes to hear:

This will only hurt a little.

Well, it’s not an exact science.

99% of people don’t have any problems-I guess you are the 1%.

This is highly unusual. I’m going to have to look it up.

I’ve heard it all, but something I was NOT expecting to hear was this:

You know that medication you’ve been on for five years? We need you to get off of it right away. It’s habit forming, and has the potential to cause long term damage to your system. At least we think so. There isn’t really much research on it. So you should stop it just in case.

Um, ok?

Why am I on this stuff in the first place? First of all, everything is experimental when you have POTS. There is no cure. There is no purple, pink, or green pill that is specially formulated for the syndrome as a whole. Doctors prescribe medications to treat individual symptoms, which is why I have a ladies’ size 8 shoebox full of pills, powders, and other potions sitting on my kitchen counter.

Sometimes, doctors use medications that are meant for other conditions to treat POTS. This is called “off-label” use. It’s good when your doctor is really knowledgeable about the medication, has used it in other patients, and has a sense of when it can be helpful. Which I totally had when I was prescribed MedicationX five years ago. But then <awholelotofstuff> happened, and my insurance changed and that nice doctor didn’t take my new insurance and his not-so-nice office staff stopped returning my calls (I know, I know a MAJOR RANT for another day). They did, however, take pity on me and continue to refill my prescriptions. So I kept taking them.

Now, my new doctor is kind enough to inform me that this particular medication is the DEVIL.

What it’s supposed to do: This medication causes muscles to contract. It’s used “on-label” for a medical condition where you completely lose muscle control. The thinking is that in POTS, if the muscles are contracted more tightly, it will force the blood to circulate through the body more effectively. This is all well and good.

What it does on the side while it’s doing that: The condition that this medication was developed for is permanent. Those patients will never regain their muscle function, so need this medication to make it work. In patients (like me!) who don’t have the “label” condition, the more medication you take, the more your body shuts off its own production of the signals that go from your brain to your muscles to tell them to contract. Essentially your brain takes a vaca in this department- why should it work so hard to naturally contract your muscles if it’s got something synthetic picking up the slack? This is the habit-forming part.

How do I fix it? Well, I stage an intervention that’s what!

Brain, I’m really concerned about you.

Slowly, slowly, slowly, I have been decreasing the amount of this medication I take. Personally, I always take small doses multiple times a day of every medication, as I metabolize so quickly (more on that when I talk about exercise and food next week!), so I have had to cut out four separate doses that I take each day. At the same time, I’ve had to be exercising my heart out (semi-literally, as tachycardia feels like your heart has pounded itself out of your chest), so that my muscles are nice and tight and don’t turn to mush as my brain slowly, slowly, slowly remembers how to signal them to contract without some prescriptive help.

The fun rating on this is 0.

But it’s over now! It took 8 weeks, and I officially finished it a week ago today. My muscles, while achy, are not mush. Save for some very annoying muscle twitches, I had virtually no side effects. I survived, and while that sounds melodramatic, it isn’t so much, because between my doctor’s warnings and all the stuff I read on the internet, I fully expected to turn into a purple people-eating monster that foams at the mouth before all of this was over. But I didn’t! YAY!

The bonus in all of this is that my phone rings less often now. See, I’ve got alarms set on my iPhone to remind me to take my medications, and they ring all. the. time. Now I’ve got four fewer, though I still sometimes stop what I’m doing at 10:30am, 1:30pm, 4:30pm, and 7:30pm and wonder what on Earth I’m forgetting…

The biggest lesson I’ve learned from this is to know my medications. You can bet that I researched the beejesus out of everything else I take, something I had done initially, but that stands to be done over and over again as new information is found and new studies are developed.

So that’s my post for today. If this post has a purpose, it’s to encourage you to check out your own medicine cabinet (or shoebox!) and take a good hard look at what’s in there. I’m not trying to create paranoia or panic, but to promote sensible Chronic behavior (iamchronicallywell encourages you to medicate responsibly!). This post’s secondary purpose is, of course, to toot my own horn. Because getting off medication is hard, no matter the circumstances. And I did it! Toot toot!

Don’t you want to buy me dinner first?

Hi there. I’m Nic. Nice to meet you. I enjoy short walks around the block, strawberry ice cream, and snuggling near the fire place on cold winter nights. I’m a Pisces, and I love to be near water. How about you? What are your interests?

You’re just here to see my rash?

Yeah, ok, no problem.

Go for it.

You guys. Med students LOVE me.

Just not the way I love them.

I can’t remember the last time that I went to a doctor’s appointment where the doctor did not go running off to gather up what seemed like every medical student, specialty resident or visiting whosawhatsee in a 5 office radius. Having so many chronic medical conditions has made me a hot commodity in the teaching sphere. Numerous doctors light up like Christmas trees when they see me coming. Hushed whispers follow me down corridors- “Is that the girl with the…?” “Yes! That’s her!” (ok, so maybe I imagine that part)

Inquisitive eyes squint at me as my doctor hovers. “Here, a perfect example! A beautiful example!” “What is it, doctor?” they ask with bated breath.

Yeah. What the heck is it, doctor?

This happened just a couple of weeks ago.

On June 1st, I was fine. Fine in that chronic illness defined way that means I’ve been better, but I’ve been worse, so I guess right now I’m ok. Actually I was more than ok, because it was my friend, V’s bridal shower and I was SO HAPPY to see her.

This is a picture of my happy face on Sunday:

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This is a picture of my unhappy face four days later, on Thursday:

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For years, I have had a history of weird skin rashes. Usually they just occur on my face (by “occur” I mean “take over”, um, ew.) but this year in addition to my icky rash face, I had itchy rash arms to go with it. Just what I’ve always wanted, a matching set!

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ANYWAY

So I went to a new dermatologist this year because my old dermatologist kept telling me that it was caused by “stress” which is doctor code for “I don’t know what it is, go away, please.” New dermatologist was downright thrilled to see my face and arms. …As was dermatologist’s very friendly colleague. …And his very friendly nurses, who at one point were all standing over me shining the World’s Brightest Light on said rashy face and arms. “What do you see?” the doctor asked all of them.

Yeah, what do you see?

Cause I’d kinda like to know what you kids are seeing.

Dermatologist can’t stand the suspense of waiting for his audience to guess.

“POLYMORPHOUS LIGHT ERUPTION!” he exclaims.

Hahahahahahahahahahaha. The name makes me giggle. Also the way that the derm says it because he has kind of a lisp and he’s like, so excited and…

…Wait.

…What?

Polymorphous light eruption. Cause undetermined. It’s a type of sun-sensitivity that can be one of three things: 1) a symptom of Lupus, 2) a precursor to Lupus, or 3) completely unrelated to Lupus. If it is completely unrelated to Lupus, it is considered an allergic reaction to sunlight.

So in addition to all the other weirdo stuff I’ve got going on, I may have now developed an allergy to the sun. Seriously. Can’t a girl catch a break?

But this post isn’t about that. It’s about a med student/male nurse adora-boy named R. To him, in this moment, I am not a human being, but a magical, sun-allergic unicorn sent from the medical gods to enliven his Tuesday.

And enliven it I do because R. gets to anesthetize me for the biopsy. Which means he gets to stick me with a needle full of liquid that may or may not cause my blood pressure to freak out, and therefore may or may not cause me to pass out, or at the very least, get a little woozy. Which I have to warn him of beforehand. Which means then that HE may or may not freak out, and therefore may or may not pass out, or at the very least, get a little woozy. Unicorns aren’t all as much fun as they’re cracked up to be, huh, R?

Really though. It’s like giving a kid a puppy that then bites the kid in the face when I have to tell inexperienced medical professionals that I might get POTSy on them while they treat me for my unusual ailment. He was so excited until I asked to lie down so it’s easier to bring me back to consciousness, in the event that he needs to. Then we just end up in an early 2000s Verizon ad in which I just wish he’d go ahead and stick me already and he’s all “Are you ok? Good.” “How about now? Good.” “And now? Good.” “You still there? Good.” Can you hear me now?

Yep. Still here, R.

Perfectly uneventful anesthetizing. Totally good. The derm comes back to lop off some skin samples, then it’s over.

“So I’ll call you.”

“Oh you will, R?” I say, batting my eyelashes suggestively.

“…With the biopsy results.”

Riiiiiiiight.

*sigh*

Maybe next time?