I Had Brain Surgery, And All I Got Was This Lousy Slit In My Thigh...And A Nasty Bout 'o Gout

****Edit: I obviously wasn't there for the post-op surgeon/parental run-down, and therefore got confused as to what I was told in my post-op stupor. I was informed yesterday that I had 46 *centimeters*, not inches, of coiling inserted. About which I am relieved, because the more I thought about it, 46 inches is ALOT. Previous post has been corrected. Carry on.*** 

 That's right, folks, GOUT. As I've mentioned before, nothing medical is ever simple or straightforward with we CFers, but I tend to take such things to a whole, new, non-CF-related, "House"-like level. Not one to dissapoint, I developed an insanely large and gross-looking case of GOUT - that's right, the crazy bruisy arthritis old men get in their big toe from eating too much steak (no offense, Dad) - IN MY ANKLES. That's right, ankle-S. THE DAY BEFORE SURGERY. Por que? Because my delicate little system evidently is incapable of manning up to a little aspirin for a few days. 

The morning of surgery, my left ankle (the star of the show) was so sore and swollen that I had no option but flip-flops, and I was in so much pain, that in order to hobble around, pack my essentials, brush my tooth and change into less jammy-looking jammies, had to take a vicodin left over from, oh yes, my most recent arthritis bout (seriously, I should be getting discounts on early dinner). It was purple, fat and ugly, and my right ankle (always the jealous type) had almost caught up by the time we got to the hospital. Trying to limp or otherwise comfortably ambulate when *both* supporting appendages are on the fritz is, I learned, an exercise in futility and both awkward and entertaining for those poor souls forced to watch. 

Thankfully, everybody was comfortable proceeding as planned, and I came through BRAIN SURGERY* to fix ye olde aneurysm just fine, 10 days ago. My CRNA said that if he didn't know otherwise already, he never would have known I had CF from an anesthesia P.O.V. While the whole MJ incident was disturbing, I must say that propofol is a gift from God. I used to be able to count on being nauseated and miserable for several hours during and after the whole waking-up process after anesthesia. I had propofol as my main anesthetic both for my Sinus Kerfuffle of Near Death 2009 surgery, and my procedure last Wednesday, and it was a night-and-day experience. I was pretty loopy most of the day/night last week, but I was also chock full 'o pain meds. But barely nauseated at all, choerent and calm (rather than hallucinating) in recovery, etc. Forget redstripe, I say hooooooorrraaaayyy propofol (when used as directed for a limited and specific purpose and by a trained professional under proper protocols...just sayin').  

After I was all bright-eyed and ice-chipped, I was transferred to the ICU for overnight monitoring. Besides having to be woken up and reminded to uh, swallow that there food in your mouth, yeah that bite you were awake and chewing 5 seconds ago...and the occasional iphone-assisted, post-op facebook/text message (far more mysterious and difficult to decode that drunken facebook/text messages, I've discovered), all went swimmingly that evening. Madge was allowed to camp out in the room, which can be quite the conquest in the ICU I've heard. Since they don't anticipate overnight visitors, she had an honest-to-pete CHAIR chair (not a recliner/foldy-outy/even smushy-curl-upable-square-chair chair), so after "tossing and turning" in that a bit, she sfinally curled up and slept in the window sill. I was afraid I was going to wake her up when I woke up, looked around, saw where she was, and started cracking up out loud because she looked like a yard gnome. (I have a thing about yard gnomes. More in a future post. Maybe).  

Thankfully, the endovascular coiling procedure I talked about in this post was possible and successful, used 8 coils totaling 46 centimeters. As Dr. Brain Surgeon explained, the coils are essentially the "rebar" to set up a road block for bloodflow to the aneurysm. My body, through many of its wondermous inflammatory processees, will come in behind that and "pour the concrete," effectively blocking off all blood flow to the aneurysm from that point forward. Once the Ortho folks decided that yep, I must just have gout (and not some crazy auto-immune disease, or fracture, or...something), and my surgeon came in and gave me the all clear the next morning, I was free to go, and in line at Caribou Coffee by 10:30.  Got my pain Rx, got on my regimen, and felt great. I even went shopping most of the day on Friday (though, in my defense, it was supposed to be a quick trip for a few errands that simply evolved, I didn't set out to go shopping all day 48 hours after brain surgery). Other than not lifting heavy stuff, and not bending at the hip too much, I free to do pretty much whatever I wanted, and was blown away that I actually could. Saturday, I even had a lunch-date/movie-and-snack-fest with my buddy A, who's studying to become a CRNA herself. 

At this point, dear readers, whether by foreshadowing or context clues or paragraph break, I'm assuming you've deduced that I did not continue feeling good enough to go shopping all day as time continued to pass. Those of you with a bend for medical mystery may have been tipped off by the bit a few sentences back about "inflammatory processees." Evidently, the first few days while these processes get their respective wheels turning, you can feel pretty great. Then a few days in, you can get some moderate-to-severe headaches as things really get going, but they shouldn't last longer than a day or so; Dr. Brain Surgeon said things typically "peak" around day 3-5, then level off over the next few weeks. 

But, if like me, you've been on some pretty anti-imflammatory drugs for a while, like say STEROIDS, the wheels can grind a little tighter and slower than they would in your average aneurysm construction site, leading to severe-to-insane headaches, nausea, and general feelings of ill will towards all man. Lortab, I found, helps the pain, but certainly does not help the sentiments of ill-will-towards-all-man. So I've been a bit of a hateful basketcase off and on since last weekend, peppered with periods of a few hours of Lortab-induced invincibility, productivity, and love for all mankind. Things were getting much better, almost "better" better, until North Carolina in all of its seasonal schizophrenia decided it'd be precious to be 90 degrees one day, 75 the next, 85 the next, the 65 and stormy the next. I get wicked headaches with weather swings like that, PERIOD. 

When I called the surgeon's office for a refill-on-the-pronto, the nurse actually apologized for being a little quick with me but told me that no, I'm not crazy, every time the weather does this, they get swamped with calls because most of their patients end up particularly sensitive to such changes. So YAY, I'm not nuts, but BOO, this is just something I'll have to get used to. Not that I mind; I'm quite grateful to "have to get used to" an increase in the intensity of weather-induced migraines, rather than say, relearning to tie my shoes or feed myself. No brain damage = :) from me. Mostly. I've got meds, and I've got squishy-beads-eye-masks, and I've got a great job and great boss that are not firing my pathetic booty for being now-you-see-her-now-you-don't for several weeks now. So no complaints, really. I came through BRAIN SURGERY just fine. I'm totally adding a "brain surgery" badge to my bad-ass sash.**

*Technically, most people classify what I had done more as a "procedure", but I had general anesthesia, a busted lip from intubation, and they used squiggly tools to mess around in my brain. I totally get to say I had brain surgery.

**I do not actually own a real, live, tangible "bad-ass sash,", it's just a term I throw around, essentially referencing the above, (i.e. "I totally get a new badge on my bad-ass sash for this", said before or after a scary procedure), much like any reference to my "cape" or "cape Jessica."  Some people call this "putting on your big girl panties", but since I feel like I pretty much live the day-to-day in big-girl panties, circumstances requiring above-and-beyond, get-it-together-and-deal, kick-some-ass super-strength I feel merits the entirely fictional and metephorical donning of a superhero cape. I believe I owe at least partial credit to my friend Megan for the cape thing. 

BREAKING NEWS: I Do Not, In Fact, Hate People

Just to clarify, from my last post. I've just been having a really hard time with the guilt I feel being so appreciative and allowing myself to feel so loved by some people, when other people make me want to check in to the joint under a pseudonym, or take out a restraining order, or both (and I'm only being a weensy bit dramatic). I've been thinking about this a lot, and realized that I actually can deduce two classifications of people/behavior that make me feel the way I wrote about last time:

1)People who make MY being sick/having procedures/being a CFer generally disproportionately about THEM, and/or make me feel like simply having them know and/or care about what's happening with me is WORK. FOR ME, I mean.

For example, the relatives who I only ever see at Christmas, and whose company I enjoy greatly for those few hours once a year, but who call one of my parents, FREAKS OUT, insists on coming to see me in the hospital (despite being told it's not only not necessary, it's not preferable), makes all these grand promises about how we're going to hang out more once I'm out and healthy, and then I'm out and healthy, and....crickets. Even when I extend the invitation, not like I'm just kicking back waiting to be disappointed or anything. So I end up feeling naive and dumb for believing all the hubbub about hanging out if I believe it and follow through, or looking wenchy and cynical if I metaphorically roll my eyes and write it off. But I always end up consoling THEM, and letting them come take their peek at the carny for real-live proof I'm not dying, so they can go back to not feeling guilty about being any closer to me than they are. And truly, they shouldn't. We really DON'T have that much in common, and if it weren't for that whole "diseased" thing, there would really be no pressure to be any closer than our few hours of catch-up and giggles over turkey and pie around Christmas. So seriously, don't feel guilty, don't feel sad, but please don't create mental and emotional work for she-who-is-healing in attempts to assuage your unjustified guilt.

2)...and this is the biggie. PEOPLE WHO PIMP ME AND MY JUICY, DISEASED DETAILS FOR ATTENTION. FOR THEMSELVES. WHEN THEY KNOW I'M WEIRD AND ILLOGICALLY SELECTIVE ABOUT SHARING THE DEETS, SUPPOSEDLY CARE ABOUT ME. I think this is pretty self-explanatory, and going in to any greater detail than can be found in my previous post would a)venture into useless bitchy gossip territory and b) be pretty redundant.

So if you're reading this, and wondering if you are or have overstepped, but all you've done is:

~genuinely inquire as to how I'm doing,

~shoot me a message/wall post/text of encouragement,

~sat in restaurants/wine bars/coffee shops and listened to virtual monologues,

~led me to believe you really, genuinely find me attractive despite this crazy gene thing,

~laughed at my morbid and/or self-depricating jokes (mini-wheats, anyone?)

~offer me honest, legitimate help,

~told me you're pulling for me,

~told me you're praying for me,

~told me you're sending good vibes,

~tell me you've crossed your toes,

~offered me food,

~read my blog and left me a comment (I love comments!)

~read my blog and didn't leave a comment (but you should, see above!)

~read my blog and then filled in people you know, that I know (or my mom or dad knows), that I would want to know about whatever is in the latest chapter of can't-make-this-stuff-up medical drama,

You have not.

The last thing I want is to alienate good-hearted, sick-humored, know-me-and-care folks because I had to blogvomit about categories 1 and 2, before I recognized the cat.1 and cat.2 patterns. It's not that I don't want love, support, and yes, attention (I am an only child, after all) when I feel bad. I just don't want to feel like I have to sensor myself, clean up (my house or myself), or otherwise make things even more complicated in order to feel loved and supported. It's not that I don't want people to know what's going on with me, it's that I want to be JESSICA, mouthy-funny-polo-wearing-cheerwine-drinking-liberal, not that girl who's sick all the time, and therefore must be inspected and leered at like a dung-slinging zoo monkey, then subsequently interrogated about said constant-sickness ad nauseum... or worse, X person's X who's sick all the time, poor poor X!

So friends who are facebooking me into feeling OK about my surgery tomorrow, neighbors who simply make me feel fuzzy neighborly feelings with your offers of help and expressions of good luck, Grammy who's keeping Cooper so I don't have to pay $20/day and can have the peace of mind that he's home and comfy, Auntie and Uncle and WeeOne who have been consistently supportive and are rumored to be bringing me tasty treats when I get home, folks who work with my Dad and have been sending good vibes via dadmail, and my AAA-mazing parents who let me freak out and cry and laugh at my sick jokes and hold my hair while I cough up gross stuff and fight like hell for me and with me and make me feel really, truly O.K. about living at home...still, and generally are at least 37% responsible for everything that's awesome about my life, YOU MATTER. YOU COUNT. YOU ROCK.

And this post was NOT about you. Promise.

"I Write My Business All Over the Internets, but How the Heck Do YOU Know THAT?" and other adventures in negotiating privacy

I started writing this as a quick comment to the latest post by bloggy maven Cystic Gal, but it got long and personal, for a comment, so I decided to transfer my ruminations over here.

One of the biggest struggles I have with this stupid disease is my often conflicting, confusing, hard-to-read-because-even-I'm-not-sure-most-of-the-time stance on who I want to let in on what's going on with me, health-wise, and how much I want them to know. I am a proud person. Not in the grade-school, my-future's-so-bright-I-gotta-wear-shades, healthy-appreciation-of-my-worth-as-a-person variety, but in the "who? me? problems? BAH!" variety.

In spite of myself, I tend to put far too much effort and energy into keeping everyone around me snowed into thinking, as the kids say, I've got my shit together. I've been this way at least since middle school, and I always assumed everyone just saw right through my act, rolled their eyes, and knew it was all for show. Which is why I would then have the audacity to get upset that my friends and acquaintances didn't telepathically understand what I was going through, or even that I was "going through" anything at all.

What I didn't understand until recently was that most everybody was drinking my kool-aid, to some degree. This is all very elementary social psych, I'm aware, but it didn't functionally click that people are generally going to just believe what you tell them and move on, not take it apart piece-by-piece and try to discern some hidden meaning from an otherwise casual conversation. (Except if you are female and 13, but thank-you-Jesus-thank-you-Jewish-God-thank-you-Oprah, I no longer am. 13, I mean). For example, if you act, live, carry yourself and speak as if you are simply too busy and fulfilled to trifle with such nonsense as finding and developing a meaningful relationship with an interested member the opposite sex, said member(s) will tend to take you at face value, call you "intimidating" or "a strong personality" and leave you alone. Ya know, hypothetically speaking.

When it comes to my health, however, this whole pride issue becomes tenfold. I am, as a general rule, intensely private about my health. There is a small group of family and friends that I am truly honest with, and I really want those people to know, and if I'm honest, I really want it to matter to those people. Other than that, I tend to swing back and forth from feeling that it's some sort of existential duty of mine to share with the world what life is like with CF (as if I could speak for all of us in the first place), spread awareness, yada yada, and intensely craving the normalcy that comes with all but your closest circle simply assuming you have bad allergies or bronchitis, purell-ing, and moving on. I vacillate between wanting everything regarding who-knows-what-when-how on MY terms, because damn it, I'M the sick one here!, and recognizing that CF and my experiences with it create a fair bit of collateral damage as well, and it's unfair of me to deny those around me their experiences of this, and their ways of coping, as well.

Or is it?

At what point do I draw the line between being a good friend/daughter/granddaughter/niece/etc, and allowing people to "experience" my CF in their own way, and standing up and acknowledging that my status as the actual patient doesn't give me license to be cruel and selfish, but it does mean that THEY should be taking how their experiences with MY disease affect, well, ME?

Do I really owe people an explanation as to why I am (sometimes) comfortable spilling my guts, in detail, for (theoretically) all the world to read, but yes, it is STILL overstepping a boundary to forward on to your entire prayer chain/gossip list and extended-families-thrice-removed email updates that were very clearly intended only for those listed in the address bar? Is it really my responsibility to "make amends" with YOU after spending three hours writing the kindest, most understanding email I knew how asking you, for the fourth time (since I've been counting) to please, please please respect me enough to respect the fact that I want to keep certain details private, even if you think I'm crazy for doing so, and get no response aside from months of tension, tension that then spills over into relationships I actually DO care about, because they care about you? At what point do I get to stand on a chair and scream, "Yes! This time, about this, it IS all about me, especially where YOU are concerned!"

Do I really have to apologize for the fact that my personality lends itself toward social hibernation when I feel bad, and so while I really, genuinely appreciate the offer, no, please DON'T visit me in the hospital. Really. Do I have a right to resent the fact that because you are upset and scared, I am then guilted into allowing you to visit anyway, peering at me like a carny act, inspecting me for signs of illness, or improvement, or lacking hygiene or attention to vanity, for details to report in your ever-inconsiderate and violating email chain, when we're really not even that close when I'm healthy?

Do I have a right to be angry that, when I'm supposed to be healing, I'm wracking my brain trying to come up with logical equations and justifications as to why I want the company and attention of certain friends, but neither from certain relatives? And six months later, after I'm better and trying to live in the present and focus on how great life is, right now, for now, because really, it's a matter when not if things will tank again, and I see you, person-who-was-wrongfully-forwarded-too-much-information, what degree of politeness do I owe your obviously genetic voyeurism into the details of my current medical status, and how long am I obligated to indulge you and attempt to gently change the subject before simply walking away in frustration?

And after I do snap, what degree of guilt is appropriate for the way I've just treated you, given that you didn't ASK to be inappropriately forwarded information, and were simply trying to be kind and make conversation in an awkward situation, given that we don't really know each other? Am I allowed to then resent you a little anyway, simply because you know so much about me for someone who knows me so little, and through no fault of your own, represent to me both the constant and specific violation of my privacy, and the greater, more general lack of control I have over even this aspect of my chronic illness?

To what degree of uncertainty and inconsistency am I realistically entitled in this realm? Is it better to be honest and consist ant, but cruel...IE, no, close-on-paper-relative, I don't want you to know anything or visit me, ever, because you've proven you can't be trusted and anything about me is really all about you anyway, but yes, friend-of-11-months, come on over! -

Or is it better, or fairer, or kinder, to be wishy-washy and inconsistent, but trying, trying, always trying to remember that at the very least, people I love love certain other people, and therefore keep trying, trying to negotiate some way to tolerate them, and this, knowing that I will always have my good days and bad days and because of this, will seem unreasonable and unpredictable and inconsistent and unfair?

Truly, I'm not sure which is kinder...I know which would be easier, but the nagging, tugging, uuuggghh I get when I think about actually just whacking through the proverbial bush, clear-cutting anything and anybody that doesn't make me feel good, leads me to believe that can't possibly be the answer. But if I consistently find myself tying myself in knots over the ways I choose to handle my own disease are affecting certain other people, who repeatedly refuse to even engage in conversations on how we can negotiate this and meet halfway, and who ignore my polite requests, curt declarations, and otherwise desperate pleas to consider how their actions affect me, does the sheer fact that they somehow are considered supportive by people who are profoundly supportive to me obligate me to consider them support by proxy and keep trying?

I don't have the answers....OBVIOUSLY. The answers, if there are any will probably continue to change, as I grow and change and as other people change. I'm still trying to define what "normal" and "healthy" and "sick" and "balance" and "work" and "play" are all respectively going to look like, in my life, generally, as a twenty-something in a turbulent, unpredictable world, and specifically, as a twenty-something with a disease that's turbulent and unpredictable in its own right. I'm just doing the best I can, for now, and I think that's really all that can be fairly asked.