And the saga continues… Or begins, really. A mere three hours after departing the homestead, I arrive at Le Hospitale fairly late in the evening, belly considerably less full of biscuit than it was 100 miles ago. Despite sleeping a good bit of the trip, I was exhausted; apparently even sleep takes a lot of energy when your organs are starting to see mirages of oxygen molecules. Nevertheless, I was still in the weirdly calm, slightly stoic, almost professional “let’s do this” mode to which I tend to default when I sense things are about to – or already have – hit the fan a bit. But I felt – and looked – like shit.

See? I told you. LIKE SHIT. Now, I *don’t do* sick pictures. To each his own, but if anything, I really only take pictures of my provisions, surroundings and such as inspired; I’m just not into the emo-patient “look how sick I am thiiiissss timmmmee, guyyyss” thing – makes me feel punier than I already do. But I knew I just kind of had to look like shit this time; not like when you walk in to your coffee table and are *certain* that your tibia has just been cracked clean in half, but upon inspection (and even days later, when you’re still hindered by a slight twinging limp), you barely have a bruise to show for it.

So much so, in fact, that I knew it was as good a time as ever to ask my mom to take a picture – a “before” picture, if you will, complete with gloomy and listless disposition. I didn’t, but I did want to be able to look back objectively at what I look like “sick” once I was better – because no matter how sick you really are, when it creeps up on you slowly (vs. the insta-misery, hot on Wednesday, *not*on Thursday variety), especially when your “normal” includes a certain calibrated white noise of general malaise, you just look in the mirror and see “I need to do something about those roots”, or “OK, just get ready and go run your errands, but tonight it’s tweezer time”. I mean maybe a “hmm… these (genetically-always-there-even-when-healthy) dark circles are taking craploads more concealer just to tone down”, or a “do I normally have to use this much blush? Am I going to look like a Groupon clown when I step into natural light?” but that’s about it – no stepping out of the shower and gazing into the mirror all wistful and Lifetime-like, or recoiling in horror and fatalism.

Not to stretch the before-and-after thing too far, but it’s kind of like when you take twenty years to gain 100 lbs instead of two – it’s a few pounds here, a few more there, and all along, you just see you, until you’ve got a flattened, 2D pixel cluster staring back at you confirming that the plane seats haven’t gotten smaller, or that your cosmetic routine has left you aesthetically tilting at windmills – pale, sallow, sunken and parched…just with really, really pink and slightly shimmering cheeks.

Point being, that’s the only reason there’s any photographic evidence of my shitty-looking-ness this go round – but also, that I’m really not usually trying to be all “fake it ‘til you make it!” (gag) and “I feel PRETTY!” when I respond to concerned comments and questions about the aforementioned pronounced shadows and marked pallor with befuddlement; I’m sincerely caught off guard and confused because all I remember being concerned about when I left the house was the oops-not-quite-dry-but-no-time-to-fix-it nick in my nail polish.

So – I Charlie Brown Shuffle into admitting, catch my breath and go through the motions. Yes, sorry, here’s my hospital card.  Phone number same, Address same, haha, yes, I couldn’t pronounce the street name until I moved there either. Yep – Insurance the same, Emergency Contacts all the same.  Get the raised eyebrow upon confirming that yes, I have a clearly-from-here, bless-your-heart, honey-dripping southern accent, but no, seriously, I don’t want to be on the clergy list; and no, I don’t want to be on the master patient list and yes, seriously, I would like a password for anyone who calls for information. Get a familiar yet acutely uncomfortable crinkled forehead and puppy-dog eyes of gaurded pity upon confirming that yes, I’m 26 and have a notarized Healthcare Power of Attorney, Living Will, and DNR with caveats and here are copies for your files.

Slow half-smile and nod as I’m told it’s a shame I’ve had to think about these things, and give my canned (but honest) response that we’ve all got our crap, my life’s pretty great otherwise, it’s the way the cookie crumbles. Hear Charlie Brown Teacher telling me how wonderful and brave I am. Check fatigue-induced hypersensitivity when wanting to scream “pllleeeeasssee just give me my papers, I’m not a freaking hero, I didn’t willingly sign on for this, and my options are literally ‘do all – or even just some of – the things’ or ‘off oneself’, so which would you choose and do not actually answer that”.

Continue smiling and nodding, receive paperwork, receive barcoded inmate patient ID wristband. Return to lobby to await transportation (I’m booked now, so I’m a liability now, so I can’t just go to my room lest I slip on a rubber glove and crack my skull. I am infinitely grateful for this policy as it allows me to receive needed help without having to ask for it and accept said help without admitting said need.) Drift in and out of sleep; check phone – nope, no breaking news, on NPR or facebook, since last checking 4 minutes earlier. Hahaha, another grumpy cat, oohh, when will I ever get sick of that thing, probably never. Try not to think about what may or may not await me when I get upstairs; focus instead on…

Oh forget it – self, once you get there, you’ve got at least another 5 hours until lights (kind of) out. Just faceplant in your pillow, queue up Cooper and pretty deserts in your mental View-Master, and turn on your brain static. Not that you should care, but strangers won’t judge you. Sure, you always feel bad when you’re here, but you actually look like shit this time, too.

So, when we last left off, I was just beginning to pack up for my impending trip to the hospital, after spending a good couple of days debating if I had a quick-and-dirty virus, or perhaps might in fact, be dying instead.* In fact, I’m pretty sure the “kidding!-(not-really)-maybe?” aspect of the later option had something to do with why it took me an extra day or two to cop to what was likely going on.

See, I’ve never been one to have had problems with my O2 saturation (the amount of oxygen actually making it to your blood where it belongs, and the thing being measured by the little clip with a red light on the index finger of people in hospitals/on medical teevee programs, expressed as a percentage) – even in situations where otherwise healthy people tend to do so, like waking up from surgery. Nevertheless, I began to suspect that a problems with my oxygen intake, exchange, or both were somehow related to whatever was going on, for a bunch of lifetime-of-patient-role-spidey-senses reasons I won’t go in to here. After deciding to be a grown up and face likely facts, rather than continue to live in blissful self-imposed ignorance (“Me? need oxygen? Nay, I’m simply a panicked hypochondriac running out of hypotheses!”) I caved and bought a pulse oximeter (the little red light on the index finger thing that measures aforementioned O2 saturation).

And then I nearly crapped myself.

“Normal” ranges are generally anything 94% or above; 93-92 can be acceptable for a short time if you’re particularly sick or have underlying health issues. The highest reading I could get was in the mid-80’s, and more than once it was hovering in the high 70’s if I had been sleeping for a while. So holy craptarts, relief and confusion and fear OH MY! Relief, in that OK, I at least know, writ large, what’s wrong, and why I feel like I’m suffocating (I kind of am). Confusion and fear because lack of information scares me, period, and I had no idea why this was happening at all ever, but particularly so quickly and severely and now. My resting heart rate was also hanging out between 140-160, with occasional forays into the 180’s if I got all frisky and like, coughed, or walked across the room, or awwwshhnap bent over to pick something up. For the sake of context, the target is 80, but at least less than 100 for someone my age and size.

To recap, I went from be-bopping along at the outlet malls feeling a-little-more-under-the-weather-than-I-let-on, but debatably “sick-sick” by even my healthier standards, to clearly requiring some form of supplemental oxygen for the first time in my life – including that awesome Fall Break of ‘04 where I weighed 94 lbs, my skin was grey, and my mom had to bribe me in to staying awake and making myself finishing a “meal” of 3 whole chicken nuggets after assisting me in the frighteningly disproportionately exhausting trek down the hall and out of my dorm. So crazy or not,  I needed a good day or so to kind of research, process and ruminate over what I might be in for upon darkening the hospital’s revolving doors. That’s how I work.

Sidebar: As long as I’m given honest, fairly reasonable expectations of what will be, or might be, happening to me; honest, balanced explanations of why it’s necessary, or maybe not even necessary, but prudent and preferable; and honest, fairly reasonable estimations of how painful, scary, disorienting, or humiliating it’s going to be, I can generally dig deep and find a way to deal and get through it, in the moment at least. (I’m not a droid, so I still sometimes lose my marbles later, but that’s definitely preferable to screeching nasal obscenities at an ENT resident when underprepared for just how strong that suction thingamabobber is going to be.)

So, let’s see. Worst case, what should I plan to deal with when I get there…OK, definitely oxygen. From a sheer discomfort/what-can-I-actually-dig-deep-and-handle-without-going-batshit perspective, no problem. But what about other tests? That blood gas thing where they stab you in the wrist and very strong people with high pain tolerances cry like teething babies? Oh my god what if they make me start out in the ICU instead of my normal floor? Will anyone still get to stay with me overnight? OH GOD will I have to pee in that swing-out toilet thing? Why is this even happening in the first place? Is one of my lungs collapsing? Has it been collapsed and I’m just too stupid to differentiate ‘”you’ve got a whole lung stuck together like fly paper” from “severe muscle spasm from coughing all the damn time for days on end”?

Once I was sufficiently convinced that I would neither be left to writhe in pain needlessly, gasp for air, or pee in a not-really toilet sufficiently uncomfortable and scared about the state of my being, I collected the necessary documents and technological paraphernalia for a who-knows-how-long variety stay, finished packing, and summoned my last frayed sparks of quasi-energy for my littlestitious “last” shower. Despite knowing I had just gotten the last good shower I’d be getting for at least a good week, I used no hair products. No lotion. And I only shaved up to my knees. THAT is how awful I was feeling, you guys. No hair products. Nay, not even a single hair appliance usage. Just a quick blow dry and a fuckitall sunglasses-sweep, with a cross eye at my emerging reverse-roots. That’s puny, y’all.

But then I got dressed, minimally accessorized (I’m not dead, after all), and I did that thing – or rather, that thing happened to me – where I got all zen, and totally focused, and on point, and “what will be will be and I will rise to meet it” – and settled in the passenger seat for the long trek towards the hospital, hope, and healing. I had three hours in the car ahead of me, in the beginning of which I enjoyed the spoils of a Bojangles’ detour and a welcome distraction in the form of the latest from around the nation on NPR. But later, as I drifted off into a self-imposed nap (anticipating the long night ahead), I couldn’t help but sort of rest in this odd certainty – a peace, even – that things were about to change in a pretty major way. I didn’t know what, I didn’t know how.

All I knew was that after almost a year of better, then worse, then better the same, then worse the same, we fixed it, we didn’t, and no answers, I had an increasing sense of just treading water, doing more of the same, waiting for another shoe to drop and give us the next clue; all the while feeling like I was on a dessert road trip where it didn’t matter how badly I wanted to get where I was going, it didn’t change the fact that I was running on fumes with no pit stops for miles. In an odd way I can’t quite explain, there was a weariness relieved, and an almost desperate hope that whatever was causing this problem with my oxygen would give us some insight into what had been wrong all these weeks and months. I wasn’t sure if it was for better, or if I was finally starting to chart my way towards irreversible “worse” – but I felt it in my bones, I was in for some serious “different”. And at that point, anything other than more of the same was good enough for me. I had a belly full of biscuit, a heated seat on a cold night, and a driver-slash-advocate-slash-mom by my side for whatever may come, and insurance to cover it all – in other words, all I needed and more.

To be further continued…

*only slightly exaggerating.

No joke, no metaphor.

Well, kind of a joke, but just in the play on “I went (PLACE) and all I got was this (CHEAP OR UNWANTED THING)”. Not about going to the beach, even, but also definitely not the sepsis part. And to be clear, going to the beach had nothing *to do* with said sepsis, but since it did start when I was there, I figured I was still within the bounds of accurate wordplay.  Also, while cliffhangers can be fun, I’m not a sadist or a narcissist, so spoiler alert: I’m basically fine now. 

But yes. I’m generally not a fan of the whole “Oh-Em-Gee, Sorry guys! Can’t believe it’s been X days since I blogged last! I’ve been soooo busy doing….(things)” type post, usually because they’re after either 3 days (nobody would have noticed!) or months and months (and filled with little other than self-flagelating promises to who-knows-who that they’ll be a better blogger this time, as if their blog could actually dump them or lock them out).  But it felt a little disingenuous to just jump right back in with a smattering of news crumbles blowing my mind lately, or how Pinterest forced me to make peace with my creative originality fixation, or a new recipe after a month of static without explaining a little about why I went AWOL.

Gratuitous beach-restaurant-art-sale-wall picture.  Because when I disappeared from the internets, I was at the beach! (And then the hospital.) But for now, yayBEACH!

…And because the only things I ever photograph are food, the places that serve food, my dog, and stuff I want to buy but know I shouldn’t so I just hoard the pictures of the stuff instead of the stuff itself. On big girl days. Where was I?

As I’ve mentioned before, I have Cystic Fibrosis. The last year or so has been fairly consumed with a repeating cycle of get quite sick (for me), quite quickly (for me), for no apparent reason (even by my relatively spontaneous exacerbation standards) –> go in the hospital, insisting on answers this time! as to why I keep getting sick –> do roughly the same thing as always, changing this drug here, or that dose there, but with no real change in cultures, drug sensitivities, test results, imaging, or other common explanatory sources for sudden and marked decline –> get almost entirely better anyway (most thankfully, I might add) –> go home and finish treatment, shrugging shoulders as to why but still cautiously grateful for the improvement –> do everything I normally do to take care of myself –> get quite sick, quite quickly, for no apparent reason roughly six to eight weeks later. When I was last in the hospital over Christmas, it was the fourth time that year (the sixth doing a 2-3 week round of IV antibiotics).  When I left, I cynically joked that I’d see everybody around Valentine’s Day, since I had last been in right before Thanksgiving. I overshot and was closer to St. Paddy’s.

I had been feeling kind of “meh” for about a week by mid/late February, but in my more normal, gradual process-of-getting-sick-again way rather than the sudden drops of 2012. Actually encouraged by this, thinking the cycle may have at long last been broken, I did what I always do during such normal, gradual processes; I added more treatments to try to beat back the exacerbation a bit more aggressively, I started taking a pretty potent oral antibiotic – and continued planning and packing for my upcoming beach trip with Madge and Faja (a.k.a. continuing life as usual, if a little slower). Salt water/salt air is GREAT for CF lungs, so I figured a week of R&R on the coast, extra treatments in tow, could only help matters.

See? Grainy Iphone Selfie taken in condo before dinner once I was there. TOTALLY don’t look septic. A little steroid-smooshy, perhaps, but definitely not septic, and I’ve got giant eyeballs anyway, so whatevs.

We went, we ate (fabulously), we shopped (a lot), and I slept. A LOT. I knew I was getting sicker than I thought I would, and that the pace was picking up a bit, but I thought I could stick things out another week until my already-scheduled doctor’s appointment. The morning we left, I was getting dressed and fancified, and started coughing. Like I do. Every day. At exactly this same point in my fancification routine. No biggie. But this time I couldn’t stop, and couldn’t stop like I had never experienced “couldn’t stop”. Rather immediately, I felt quite confident that if I didn’t make my way to the bed or the floor likerightnowthisminute, that my legs were going to just give out beneath me; and though I never have been one to do so, that this just might be what it feels like right before one passes out. I simply could. not. stop. to. inhale. When it finally DID stop, I found I couldn’t really breathe back in, either. My heart was beating so hard that I felt like my pulse was choking off my airway. No big gasps; no sudden, deep, panting relief, just this very weird sensation as if my lungs were already full of air (although they weren’t) and yet still starved of oxygen (because they were).

From that point forward, it took me another 2 hours to finish packing what would normally take me 30 minutes. Fold a few shirts; put in suitcase. Forget that bending over makes my heart race and cuts off my airway again; lay down for ten minutes. Get back up, pack toiletries; go lay down another 20 minutes as legs feel like jello. I was concerned, but still not panicked; I assumed it was just a pretty severe flare of the asthmatic component of my ailment collage, and once a few medicines kicked in, would calm down.

It got a little better, but not much. Because I have these sorts of freak things happen just enough to know how to ride them out (nothing like showing up at the doctor, totally fine, and shrugging, “I really was pretty sick 2 days ago”), and because I’ve been playing nurse/chief investigator on myself since I was in roughly the third grade, and because anyone with a chronic condition will tell you that you don’t go to the ER unless you are in so much pain that you would invite a bear mauling for the sensory distraction OR are fairly convinced you’re in the actual process of dying quickly and uncomfortably (and probably won’t make it until weekday business hours), I decided to do all the things I know to do for these sorts of things and wait it out a day or so. Things would wax and wane just enough to make me thing, “Maybe?” with each trough, but would ramp back up with a little more “Nahh, this shiz is getting real” at each successive return. I called my doctor, started some laundry, and started preparing for a nice long stay in Le Hospitale.

To Be Continued…