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!

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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:

fingers_crossed_by_joker_alive-d37rrad

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!

The Heart Attack Diet

I started fainting when I was 13. It was during winter break from school waaaaay back in 2002. Plop, plop, plop, I could NOT stay conscious that week. When that happens your pediatrician outsources you to a pediatric cardiologist (if they don’t, they should). So, for Christmas that year, Santa brought me a shiny new doctor whose resume read like a novel of cardio-accolades. Also, a bike, which I have yet to learn how to ride…

Despite said novelistic resume, Dr. Cardio didn’t have much to go on in treating my “rare fainting condition” (that’s actually what he called it you guys, I did not learn the words “Dysautonomia” or “Postural Orthostatic Tachycardia Syndrome” for seven more years). The information was just not available. It’s still pretty murky, and most everything is experimental, as I’ve said before.

What on Earth were we to do with me? At that time, the medications I was prescribed just made everything worse. Pharmaceutical intervention would just have to wait (again, seven years, when I would eventually find a specialist).

Enter The Heart Attack Diet.

Seriously.

A hallmark of POTS is low-blood pressure. When your blood pressure dips, your heart pounds faster (tachycardia) to try to help bring it up. Except with POTS patients (POTSies, POTSy people, etc.), our blood pressure doesn’t necessarily respond to our hearts’ desperate attempts to perk us up, so we just walk around (Ok, sit around… No, you’re right, lie around) with really low blood pressure and really high heart rates. It feels like you’re running all. the. time.

My brilliant (*sarcasm*) doctor’s advice for me was to simply eat all of the foods that he would tell my high blood pressure-ed, angioplasty-ed grandfather NOT to eat.

Red meat? You better, girl, that’s how we’ll treat your anemia…

(Which, side note, it didn’t, at least not enough, so I still had to take a lovely injectable medication that feels like a bee stung your tush, 3 times a week for 8 weeks. And drink liquid iron supplements at the same time, which is the MOST DISGUSTING THING, DON’T EVER DO IT, unless, of course you have to. But it also didn’t really work…)

Put salt on EVERYTHING. Salt your potato chips. Those suckers are never salty enough.

Drink Gatorade, Powerade, any type of electrolyte sports drink. By the gallons. Good thing Costco’s got value packs.

My friends in high school used to tease me because I would bring huge lunches full of my cardiologist-mandated high sodium junk food and eat all day long. The joke was they never saw me without food in my hand. Pretzels, chips of various brands and flavors, Little Debbie snack cakes (cause those babies are high in sodium…and sugar…and fat… yum…), etc. I even had a doctor’s note.

Please allow Nicole to eat salty snacks and drink Gatorade during class. Also, please allow her frequent restroom breaks. She has a health condition.

(I have a copy of it somewhere. I tried to find it so I could post it, but alas, the basement has eaten it for breakfast…)

Every day after school, my mom would stop at the McDonald’s down the street so I could get a Super Size fries. I would finish them before we even pulled in the driveway (3 blocks, people!). It was the only way I could focus to do my homework. I cursed Morgan Spurlock when his documentary Super Size Me came out and they stopped making Super Size. (If you’re reading this Morgan Spurlock, I’m still kinda cranky, but whatever, I’ll get over it. Love your other work, btw)

So did it help? All this Heart Attack food?

Well it kept me going through high school. But then, as my health got progressively worse and worse, it was pretty clear that something was negatively contributing to it.

I have to be honest, because honesty is the best policy, even on the Internet (said no one, ever…haha, no but really…). I did an elimination diet to find out what was making me so sick digestively. This was before the big allergen-craze started, so I just took out everything that I was eating until I got down to the most basic food…plain white pasta. I ate plain white pasta for breakfast, lunch, and dinner because it was “bland” and so wouldn’t make sick. Except (insert face-palm here), you guessed it, wheat and gluten make me sick! All those pretzels, all those Little Debbies, all that Powerade (cause it used to have wheat in it, kiddos! Though checking now, it appears they’ve changed the ingredients in some flavors), were slowly and surely starving me to death with every bite or sip. I had lost 20lb I couldn’t stand to lose.

Clearly, wheat and gluten (barley, spelt, all those other hidden wheat by-products) had to go. Apparently so did broccoli and other cruciferous vegetables like cauliflower (Yeah, you don’t want to know. Also, please warn me if I’m at your backyard BBQ and you’ve hidden cauliflower in the mac and cheese or broccoli in the brownies so your children will eat more vegetables…I blame you for this, Jessica Seinfeld! Google her book Deceptively Delicious) Out went the dairy (though I still eat ice cream every great once and a while), and soy. Bye bye to seafood and shellfish. I can eat ground corn, but not corn kernels-weird. No more nuts.

I started paying more attention to how food made me feel, and realized most of what was supposed to be “helping” me was really just contributing to the problem. Sure I still need sodium, but junk food doesn’t have to be the only option. V8 juice and pickles make me feel just as good as a bag of Fritos ever did.

People always ask me, “So what do you eat?” I still eat red meat like it’s my job (cause it kinda is, if by job, you mean keeping myself well fed and happy). I eat chicken. I eat fruits and vegetables that haven’t been fraternizing with broccoli. A lot of rice, preferably brown. And potatoes. Sweet, sweet potatoes. My true friends.

You would be surprised at how many French fries are not gluten-free. I’m pretty sure the only fast food ones available are from Chick-fil-A. Even in the frozen section of the grocery store, CHECK THE INGREDIENTS.

Anyway, if I am in a POTSy funk, nothing brings me back to life better than French fries. I know they aren’t technically healthy, but for me they are magic food. So I will eat well 90% of the time, but that 10% is reserved for my white potato buddies.

The most important thing I learned from the Heart Attack Diet is the power of food. Really. If you go through your day not thinking at all about what you put in your mouth, I would not be surprised if you are tired and cranky and no fun to be around. Even if you don’t gain weight from it (I never did, because, side effect of that super fast heart rate, my body is/was always burning, well, everything. Don’t hate me, it also means I am hungry all the time and have low blood sugar-hypoglycemia- which is neither fun nor glamorous), your food choices matter. If I want to be clear headed enough to write this blog, you can bet I’m going to eat a salad, a chicken sandwich, and some grapes for lunch instead of a burger and fries. When I feed my body well to begin with, I don’t need quite as much sodium to get me though the day. While it helps my blood pressure, sure, sodium isn’t the only thing I need from food.

Now, if you’ll excuse me, it just so happens to be lunchtime as I’m posting this. And after writing all about food, I am famished… Till Friday, Chronic readers!

Packing is the WORST

I am lucky enough to be traveling a few times this summer. I am super excited for my trips (There are THREE, people. It’s a BIG DEAL, but alas no plane travel just yet #ineedmoreoxygenthantheyhaveat3000feet). What I am NOT excited for is the packing. Seriously. It’s making me crazy. Like, really crazy.

When I was little I was obsessed with RV’s. They made so much sense to me- when you wanted to go somewhere, you just go, taking ALL of your stuff with you. I was so into them that my Barbies even had their very own pink RV in lieu of a Dream Home. There is a fantastic song by Kacey Musgraves (who is wonderful!) called My House about traveling the US in a mobile home and it speaks to me.

“If I can’t bring you to my house/I’ll bring my house to you…”

Yes, please.

I’m not a good traveler. I always want to be, but it’s one of those things where when someone asks why I don’t go more places I just sigh heavily and say “It’s complicated.”

Because it is.

First, and most importantly, I have to pack my medications. Which means I have to check to make sure I have enough of each one to get me through the duration of our trip. This includes math, as I take multiple doses of each prescription. So I check and then recheck, because chances are I miscalculated and thought I needed to have 200 pills when really, I just need 20. I refill the ones that are lagging and then pack them up, usually in two of those gigantic Ziploc bags. When I’m at home, I keep them all in a shoebox on the counter next to the refrigerator (referenced in Friday’s post- it was a great pair of shoes too!)

Next it’s clothes. This part is more universal. Except that my body doesn’t like to regulate its own temperature, so I have to bring twice as many shirts so I can change when I have awkward, weather-inappropriate hot flashes in the middle of the day. (I should really consider only vacationing in tropical places, that way, everyone will be as sweaty as I am. Except that if I went somewhere tropical, my body’s inability to cool itself off might make me implode-#messy)

Then, it’s on to toiletries. I have very specific products I use, and I use a lot of products. Toothbrush, toothpaste, dental floss, dry-mouth rinse. Special nightguard that keeps me from grinding my teeth at night (clinically proven as treatment for migraines, too-bonus!). Those nose strip thingys so I can breath while I sleep. Sensitive skin body wash, sponge-loofah-thing, shampoo & conditioner (both sulfate free!), comb, hairbrush, elastic bands for ponytails, bobby pins. Lotion for body, lotion for face, sunscreen (lots and lots of sunscreen! PS the biopsy hasn’t come back yet, but I’m operating under the assumption that I am sun-allergic). A handful of makeup (which I probably won’t end up wearing, but I like to pretend that I am a girl who wears makeup and not a girl whose makeup will melt off her face during afor-mentioned hot flashes midday leaving a face that looks like this:

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Now it’s extras. I am lucky that I no longer have to bring quite so many medical apparatuses (apparati?) with me anymore. Because traveling with a (1) wheelchair and a (2) shower chair is a real pain in the rear. Sure you can rent them when you get wherever, but (1) how are you gonna get me to “wherever” in the first place and (2) um, gross.

Back to packing. Heating pad, for sore muscles. Pillow, because really, who can sleep without their own pillow? Blanket, because backseat of the car? Yeah, you’re now my bed. Computer (so I can write to you from wherever I am!), and all of its bits and pieces- case, mouse, cords, chargers for things. Book to read, reading glasses, second book because chances are I will finish the first book and then I will be bored. Some form of exercise equipment (I am that girl who will wake you up in the morning because she is doing Zumba on mute while you are sleeping- sorry Sissy!) to keep up my cardiologist-mandated exercise plan.

Ok, so I have all of my stuff (In case you haven’t noticed, this post is doubling as my checklist). It’s sitting in a huge pile in the middle of the floor. Now all that’s left is to stuff it into my gigantic rolling duffle bag.

You guys. This duffle bag:

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I got it for $25 at TJ Maxx (yes, I am a Maxxinista), and it is so big, I could probably curl up in it and ship myself somewhere. And it rolls, thank goodness, because I fill it up with so much stuff it would break a scale. Before it, I used to have like, 3 different bags to keep track of. Now I just fill up this sucker and even though it’s nearly impossible to move, at least everything’s all in one place. Right?

It takes up half the trunk. All by its lonesome. I don’t travel by plane, and good thing, because if my duffle were aboard, I don’t think we’d make it off the runway.

So I fill up the duffle. I have to sit on it to get it to close. Then I have to sit on the floor and catch my breath because WOW that was hard.

Next, I’m on to the kitchen to grab some snacks. I am allergic and/or sensitive to most everything that can be bought at highway reststops. For instance did you know that BBQ flavored potato chips are NOT gluten free? Those suckers have barley malt in them. Gluten hides EVERYWHERE- not just in dark alleys, but also unabashedly out in the open (gluten has no shame). I am better off bringing my own stuff. I am also more likely to choose V8 juice and pickles for my sodium (it’s a POTSy thing- we don’t retain water so we eat enough sodium to make a cardiologist cry under any other circumstances), which are at least a few rungs higher on the “healthy” ladder of sodium choices. Yes, I know that is an oxymoron.

So I lied. I don’t just have my giant duffle. I have my giant duffle, two pillows (because one is never enough), a blanket, and a bag of food. After I put them in the car, I go back inside to check to make sure I didn’t forget anything.

Which I did.

Oh, and I might need that.

And one of those…

I should probably bring that <justincase>

By the time my travel companions (aka, my long suffering family) go to put their stuff in the trunk, there is very little space.

Ok, I lied again.

There is no space.

We can strap my sister to the roof, right?

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?

Here goes something…

Hello! Welcome!

I’m super excited to be starting this blog and I’m glad to see you here. I’ve been going back and forth about how I want to begin because it’s such a weird thing to introduce yourself to the Internet. I’ve actually wanted to start this blog for a while, and I guess the best way to begin is to tell you why it’s taken me so long to start.

Unfortunately, I have to tell kind of a crummy story to do so…

About two years ago, I was finally starting to feel a little bit better after having been wheelchair bound and home bound for a long while (see What’s POTS?). My older sister had just moved home after completing her graduate degree (she is a rock star!) and had offered to take me to the library, as my current stash of things to keep me occupied was dwindling. When we got there, we parked in one of two empty handicapped spots, and I hung my permit from the rearview mirror. I gulped some Gatorade, took a deep breath, and got out of the car, psyching myself up to gather the energy it would take to get from the car to inside- a few hundred feet- and then to the counter where I could pick up the books I had on hold.

Two older men were standing in the parking lot, blocking the handicapped space next to us as they chatted. One had his dog with him, clearly out for a walk. When my sister and I got out of the car, the one with the dog said something I didn’t hear. I was too focused on getting from Point A to Point B. I did hear my sister say, “Yeah, well, looks can be deceiving,” but I couldn’t imagine what she was talking about. I was too focused on the task at hand.

When we came out of the library all of 10 minutes later, me reveling in my success of having made it (!), one of the men had left, but the one with the dog remained, hovering around our car. I still didn’t know what was going on, but I could feel my sister tense, and we quickly got into the car and locked the doors.

That’s when I heard it- a loud thunk. The man slammed a plastic bag full of his dog’s poop at my sister’s driver side windshield like he was a handicapped-defending vigilante ninja and the poop bag was his nunchuck of choice.

…Whoa. That got a little heavy there.

Please enjoy this picture of a baby elephant playing in a field of ducklings while we all calm down a minute:

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My sister cracked her window and in the most badass, don’t mess with me, big sister voice, yelled, “Hey! My sister has a serious medical condition that affects her heart and we have every right to park here!”

Now I knew what was going on.

It took a little while (thanks a lot, brain fog) but I figured it out.

We didn’t wait around to see what might happen next. My sister pulled out of the spot, and we sped away… right into a blockade closing the road, which meant we had to turn around and drive past the man again, at which point I made my measly contribution of giving him the finger.

What does this all have to do with me starting a blog, you wonder?

Here’s the thing. I’m worried that the Internet is that man with the dog, just waiting to throw a steaming bag of poop at me (because have you seen yourself lately, Internet? I would not put it past you). I’ve been too afraid to put myself out there, because I don’t want the Internet to stand around judging me, telling me I’m not sick “enough” or somehow don’t know “enough” about chronic illness to justify me having a spot in its parking lot.

So what changed?

First, I got tired.

I am tired of people like that man wielding power over me (full disclosure: I cried on the way home that day. Who wouldn’t?), deciding for me what my experience is or is not. It’s mine people. I get to decide. Back off!

Second, I got stronger.

Having awesome people in my corner, like my sister, has helped me to see that I can put myself out there because I know I’ve got good people backing me up. What’s even better is that as I have progressed on my path towards better health, I’m starting to see that I am finally capable of backing myself up, too.

So that’s it then, Internet, there’s my introduction. That’s the reason why I’ve been scared to start, but also the reason I’ve finally decided that I can’t continue to wait around for someone else to write the chronic illness blog I want to read.

Now, I’m looking forward to writing this blog, to sharing stories from my experience, and maybe the occasional guest post from a friend or two. I want you to know what it’s actually like to navigate the world as a 20-something with a chronic invisible illness. And I’m hoping that by sharing what it means to deal with chronic illness that I can finally find my way to some long overdue chronic wellness.

My illness may be invisible, but that doesn’t mean I have to be.

Love, Nic

P.S. Thanks again, Sissy ❤