Monday, May 25, 2009

Some Pictures Need No Words

Yes, I'm still here. Nope, nothing is wrong and not much has changed. Just taking a little time off in my own "No Salt Zone" away from CF world to process some of the stuff in my life right now. And, of course, to play wildly since it's finally summer here in NYC. Case in point: the above pic was snapped by my fantastic friend Ben as we walked across the Brooklyn Bridge on Sunday. Spent the afternoon playing in DUMBO (Down Under Manhattan Bridge Overpass, for the non-NY set), walking around/exploring, and eating ice cream on the pier before catching a water taxi back to our lovely little island of dreams over here so I could spend some quality time in the dogrun with Sammybear before hitting up our favorite West Village sushi joint. This was, of course, capping off a weekend of dinners with friends and rooftop cookie binges overlooking the lit-up Manhattan skyline, which is what I did both Friday and Saturday nights.

Yeah, hard to believe I complain sometimes, huh?

So I can't promise it'll be interesting and I can't promise it'll be funny, but I do promise that I'll be back on the blogging bandwagon sometime sooner rather than later. And considering I'm more than a month out and still living it up (not to mention completely and totally IV free), I think I can also promise a little gratitude.

Monday, May 11, 2009

Well, That Was . . . Interesting

Quick post to say that I'm back from my right heart cath this AM. More later, of course (if you really think I'm going to let this one go without describing every detail then you don't know me well enough yet!), but for now here's the basic rundown:

  • My heart is fine and no SVT (very good)
  • The doctor who performed the "procedure" was what some might call really really ridiculously good looking (good and bad -- let's just say that it's not the most modest of experiences!)
  • They numbed my neck to the point where I really couldn't even feel the catheter (you'd think that would be good, but in my case it was bad)
  • I had an allergic reaction to the lidocain used to create said numbness of the neck (bad. Very bad. Bad bad bad bad bad)
  • I'm HOME! (Good enough to totally cancel out all the bad -- almost.)
In other words, the fat lady has sung (and if I gain any more weight I might be able to join her!) and it is officially over. No more heart caths for me -- and that's the very best news I could have asked for!

Saturday, May 9, 2009

Great Strides #1

How many cystics does it take to walk two complete circles around the Philadelphia zoo (and actually LAP a few of their non-CF teammates in the process)?

Give up?

Well, apparently the answer to that all-important question is two, just so long as those two are as unbelievably awesome as Amy and me! (Okay, so maybe we're believably awesome, but still awesome nonetheless.)

In case you haven't already guessed, I took the train into PA this morning -- REALLY f-ing early in the morning, I should add -- to join Amy's "Blue Crew" Great Strides team in walking laps around the animals at what is I guess the nation's first zoo. It was actually my first time in Philadelphia at all, aside from passing through on the train between DC and NY, which I'm fairly certain doesn't qualify as a real visit even by fast-paced NYC standards. Basically I came away from it all with the following observations about the city of brotherly love:

1) It's really, really, REALLY hot

2) If the various team t-shirts for the walk are any indication, the people of Philadelphia have a mild obsession with the color blue.

3) It has hills. Even in the zoo.

4) It is largely if not entirely populated by Amy's friends and co-workers, who came out in pretty much record numbers to support her and to fight CF (but then, we all understand why Amy attracts that sort of admiration, right?).

5) Oh yeah, and it's home to some rather ridiculous but very adorable monkeys.

Very fun day. Amy was sweet enough to chauffeur me around for the day in her stylishly decorated jeep, which I can guarantee is a LOT cooler than the cabs I'm going to use to cart her around NY next week. Six years in NY and I have yet to see a cab with any bumper stickers at all, much less one as great as those in Amy's collection. We also got to compare pulse-ox readings after completing the aforementioned hill climbs. Believe it or not she kicked my butt -- mine was just consistently crappy in the mid to upper 80s, but Amy is apparently a woman of far more exciting extremes, so her's was both higher and lower than mine at various points. Show off.

I'm super excited to host her in return next week and do the Manhattan walk. Last time I checked Battery Park City didn't have any flamingos, zebras, or large organgutanges, but we do have some really pretty views of the harbor. And either way we're raising money to help fight CF, which always makes for a wonderful day.

Tuesday, May 5, 2009

Meet Betty

Part of the point of a personal blog is to get to know the author, right? And let me tell you, there's a lot you guys probably don't know about me, starting with the charming little fact that my father owns a sailboat that is actually named "The Betty Pepper."

Surprisingly, despite its rather ridiculous name, The Betty Pepper actually floats. Don't get me wrong, I wouldn't strike out for Japan in the thing, but it does just fine lazing its way around Lake Pend Oreille in Sandpoint, ID (which is, incidently, the birthplace of Sarah Palin as well as the loaction of my parent's lakehouse). The Betty Pepper and I have spent a lot of time doing truly ridiculous things, like fishing for trout using bubble gum as bait. Don't ask.

Anyway, the point of this story isn't actually boats, because to be honest, the only really interesting fact about this rusty little sailboat is the fact that it's actually named after me. Well, kinda. See, when I was born the nurse couldn't believe anyone would be so crazy as to name their child Piper, so she inverted my first and last name (and butchered both, I might add) to come up with the only slightly less weird name: Betty Pepper. And apparently not too much has changed in the last 27 years, because the other day I received a phone call from my transplant team informing Ms. Betty Piper that she has a cardiac cath scheduled for next week. If I see her, I'll be sure to pass on the message.

How people get "Betty" out of "Beatty" I'll never really understand. What word in the English language has a silent A? Seriously, I can't think of one. And even if one does exist (I'm fairly certain it doesn't), who spells Betty with an extra A thrown in for kicks? Would any parents ever really subject their child to a lifetime of mispronounced names just to satisfy their desire to stand out from the crowd in the spelling department? Is Betty by itself so totally boring that we have to start adding random letters just to jazz it up a little?

Even more perplexing is the fact that throughout my life this mistake has been made about 50 times, and probably 49.5 of those times the culprit was an employee of a hospital. The hospitals have changed, the nurses have changed, but the overwhelming urge to call me Betty is apparently universal. Maybe Piper is such an odd name that "Beatty" actually seems LESS ridiculous. Maybe all the nurses in the world got together and decided to play history's largest and longest-running practical joke for 27 years. Maybe I just really look like a Betty. Who knows?

The thing is, the medical context is probably the one place I really don't want my name to be incorrectly recorded. Everytime this happens I'm secretly worried that, somewhere in the collective insanity that is Manhattan, the real Betty Piper lies waiting, wondering when the dotors are finally going to schedule that cardiac cath she's been needing. And God forbid Betty take a trip uptown to visit the hospital, because she'll probably be very surprised when they try to hit her with a lung transplant.

In fact, I'll bet Betty doesn't even know that today she went to the doctor, that her PFTs were down to 33%, and that her doctor put her on oral Cipro to try and stave off what might be the start of yet another cruddy CF exacerbation. And since she doesn't know she has CF, she probably won't be all that pleased to learn that she's gained 6 pounds since her hospital admission in April (she probably won't even remember the hospital, come to think of it). She may or may not know enough about antibiotics to be excited by the fact that she's no longer on TOBI at all -- instead she'll be doing one month of Azli alternating with one month of Colistin. She also probably won't know that Colistin used to cause her to have really f-ing annoying coughing fits, but I'm sure she'll learn.

Of course she also gets to do TWO Great Strides walks in the next couple of weeks, and she gets to meet some of my wonderful CF friends, so I guess its not all bad. I just hope she likes walking with O2, because her sats really haven't been that great lately. Luckily she's been kicking ass on the treadmill (and STILL gaining weight - GO BETTY!) for the past couple of weeks since her discharge, so she should be in great shape to raise some money and walk her newly fattened ass off!

Poor, unsuspecting Betty. She has no idea what a crazy, tough, beautiful world she's stumbled into, but I'm sure she'll update . . . just as soon as she gets her footing.

Saturday, May 2, 2009

What a Difference a Week Makes

One week.

Seven days.

One hundred sixty eight hours.

Ten thousand and eighty minutes.

Six hundred and four thousand eight hundred seconds.

This is how long I've now officially been WITHOUT a needle in my arm. Sure, one week might not sound like much -- although given the past four months I'd say it's nothing to cough at -- but six hundred and four thousand eight hundred seconds? Now THAT'S damn impressive! And frankly I think I may be only 11 steps away from breaking my IV drug use habit altogether, because believe me, I readily admit that I have a problem.

(And no, for those of you wondering how I ever survived on the playground being such a nerd, I did not, in fact, do all those calculations myself. Google is an amazing thing.)

It's been a fun week and I have a great weekend planned, mostly involving dinners with friends, hanging with my sister, and walks with my puppy. On Monday I have my art class, which is just one of the ways I'm keeping my sanity, um . . . I mean "occupying my time" . . . while not at work. It's actually really fun. I wanted to paint, but my design-school graduate, wildly creative fashionista of a sister suggested that drawing might be the better place to start. So I found a class and have been dragging my 18x24" drawing pad and set of charcoals and pencils all the way over to the Chinatown/Lower East Side area once a week. Between that, book club, my normal social schedule, and all the extra treatments and whatnot (SO much time!), I'm beginning to wonder when I actually had time to work in the first place. Okay, so not really, but I'm at least not tearing my hair out (yet). I would look really strange bald anyway.

So are you all ready for the secret to my staying healthy for over six hundred thousand seconds? Because I'm convinced it's due to the fact that the rest of my life is so amazingly ridiculous. Take, for example, my visit to the gym yesterday. It started out normal enough, with me sporting my ipod headphones and my O2, but then as I was halfway out my apartment door I realized I was going to work out, which of course meant I was going to cough. A lot. And, remebering my earlier post about the dreaded swine flu (cue the scary music), I kinda figured that other people might not appreciate my coughing fits right now -- plus I wanted to avoid any snide comments -- so I grabbed a mask from my bottomless pit of medical supplies and off I went. (On a sidenote, I have to admit I was feeling pretty ridiculous at that point; between the headphones, the portable O2 concentrator, and the mask I probably looked like I was anticipating biological warfare to break out at some point during my 30 minute workout.) Anyway, I made my way to the gym in my building, mask and all, and hopped up on the treadmill for some serious hill walking. At which point a woman appeared in front of my machine and the following exchange took place:

Random Woman: *flaps mouth incoherently*
Piper: Hi.
RW: *More mouth flapping*
(At this point I realized that, no joke, I still had the headphones on. I took them off.)
P: I'm sorry, I couldn't hear you. Did you say something to me?
RW: Yes, sorry to bother you, but do you have swine flu?
P: *Really confused b/c I hadn't even started coughing yet* Um, no.
RW: *Nervous laughter* Oh, I just wondered because you were wearing a mask and I thought that maybe . . . *trails off, more nervous laughter*
P: No, no. I just wear this because I have a lung disease and I cough, plus I need to protect myself from viruses.
RW: You mean like swine flu?
RW: Um, I'm not hysterical, I promise!

Oh how I beg to differ, lady.

But really, how could I ever get sick when doing so might mean I'd miss out on more of that kind of craziness? Although then again, I can only imagine what kind of mass insanity is going on right now in the New York City hospitals. It might actually be worth a minor illness just to take a field trip uptown at this point.

Just so long as it isn't swine flu.