Trippin on the Vfend

Yesterday, Voriconazole and I were introduced for the first time.  It was such a small, unassuming little pill, and I've got way too much on my plate right now to be looking for anything serious, so I assumed ours would be a casual, minimally intrusive relationship - you know, the kind where your paths have to cross briefly in the morning and briefly before going to bed, but other than that you just go about your own lives and try to stay out of each other's way.

Then I crawled into bed last night, turned out the lights, and immediately went into panic mode due to the fact I was fairly certain I was having some sort of stroke.

It turns out Voriconazole (street name Vfend) has a lot more punch than I gave it credit for.  It's meant to treat fungal infections, but what you may NOT know is that it will simultaneously do some seriously trippy things to your vision.

I started taking the pills yesterday morning, and for a large part of the day I noticed that everything in our apartment looked a bit off.  Not blurry, exactly - just really hazy and BRIGHT.  I attributed this phenomenon to the fact that I'm in lock-down study mode and have been staring at computer screens and tiny-print books non-stop for the past three days (and, though I hate to admit it, my eyesight is definitely not improving as I approach the end of law school).  As the day went on, I stopped noticing it, so I assume it got better - then, late last night as I was studying, the hazy brightness started returning, so I decided it was a good time to call it quits and go to bed.

That's when the real trippy stuff started.  It was seriously like a strobe light and disco ball were having a party in our bedroom and no one could see it but me (. . . that doesn't sound insane, right?).  As I lay there with my eyes wide open and darting around the room, trying to figure out what was going on, I remembered my doctor warning me that this medicine often caused temporary color blindness.  This gave me the idea that maybe it could cause other strange vision issues, so I whipped out my smart phone and conducted a quick research project on Vfend side effects.  Sure enough, and much to my own relief, "the most common side effects reported are visual side effects…including wavy lines, mild blurred vision or photophobia." (had to look the last one up - it means an abnormal sensitivity to light).  It also said these side effects only last a few hours after taking the medicine, and even that is only for the first few days of taking the med course.

And so, once my mind was put at ease, I just decided to chill and let the Vfend have its little strobe light party until everyone got tired and went home.  Then I finally got some sleep.

It looks like Vfend and I will be having a slightly more intensive relationship than I'd anticipated, but so long as it holds up its end of bargain (that is, ridding my lungs of any aspergillus traces), I'm willing to put up with its late-night disco parties and the day-time "glow" it projects onto all the objects around me.  For now.

So what was the point of this post?  Honestly there's not much of one, other than wanting an excuse to put off starting my morning study routine.  I guess I just want anyone out there who is trying voriconazole for the first time to know it's normal to be seeing bright lights in the darkness, and no, you're not crazy or dying.

That's all for now.  Back to studying crim pro and negotiable instruments!

You might be a CF patient if...

. . . you've ever put on your Vest and turned it down to the lowest frequency while you sing so it sounds like your voice has opera-singer vibrato.

Haha, I used to do this all the time when I first got my Vest when I was around 12 years old.  Something made me think of it this morning, so I gave my husband a demonstration - and it was pretty awesome.  If only my voice had any kind of natural talent for finding the notes in the first place, I might be on to something here!

The Art of Almost-Lawyering

An itch to blog hit a few days ago, so in the back of my mind I've been trying to think of a "theme" for my next post.  Then Friday night, as I lay in bed wide awake from 2-5 a.m. (oi, that was random - I'm not even on steroids!), it occurred to me that I haven't been great about writing about the law school aspect of my life, which was one of my primary goals when I first started this blog. Soooo, here's my latest shot at it:

I've had a new internship since school started this semester, and it has been absolutely amazing. As I mentioned in my earlier post regarding my summer immigration internship, I loved the experience but was disappointed there wasn't more "legal training" involved.  The job provided some great communication experience in consulting with clients, and I also learned a lot about the process of immigration, but when I left I realized I really wanted exposure to some more traditional legal practices.

Therefore, this semester, I applied for and landed an internship with a local non-proft called Legal Aid.  Legal Aid's mission is to "ensure equal access to justice" for people living near or below the poverty line.  Basically, it's a chance for people who can't afford a lawyer to gain access to some sort of legal advice or representation.  The office doesn't practice criminal defense or personal injury litigation, but other than that, most legal issues that people bring to us are fair game.  It's been fantastic working at a place that allows interns to get exposure to a number of legal fields.  I've mostly been working in family law, but have also worked on some landlord-tenant cases, third-party debt collection issues, wills & estates documents, expunction pleadings (which is what a person files to request an arrest be removed from their record if the charges were eventually dismissed), and more.

It has just been a great experience all around.  There have been many times I felt like something was just thrown at me that I had no clue how to handle, but being thrown into the middle of something is oftentimes the best way to learn it.  I've gained lots of experience drafting various pleadings, petitions, answers, final orders, etc.  (Funny story/random fact:  in my family law class last semester, one of my assignments was to draft temporary orders in a child custody case.  Throughout the whole assignment, I kept thinking "This is so dumb!  Why would my professor have us write the judge's orders?  If it's the judge's order, the judge will be writing it, not the attorney!"  WRONG.  As I've only recently learned, in most cases, at least in family law, the attorneys draft court orders, not the judge giving the orders.  The orders are either drafted before the hearing and presented to the judge to sign at the end of the hearing once your case is made, or the judge will hear a case and make a decision and one of the attorneys will offer to draft the orders and bring them back up for the judge to sign at a later date.  Who knew?)  

I've also received a temporary bar card, which allows me to practice law under the supervision of an experienced attorney, so in the last few weeks I've had the chance to examine a witness at trial and to participate in a few court hearings.  That was way cool!  This job is also fun because the office building is downtown, just a few blocks away from all the different court houses, so we (the interns) get to walk down to the courts almost every day for one thing or another.  I don't know why, but I absolutely love that part of this job.

Working in the legal field is interesting, because, for the most part, you only see the "crazy" side of a person's life that has led them to needing help with a legal issue.  The issues I have seen in the past three months alone have shown me how truly boring my life is. (Throughout the day I sometimes send my husband texts of "Things you would probably only hear at Legal Aid" - example: "Well, sir, when I type your name into google, the murder comes up as the third hit.")  It's also been an eye-opening experience to just how much hurt and messed-up stuff there is out there in the world.  The lawyers I've been working under are all fantastic and dedicated to the cause of helping people going through hard financial times through the legal system, and I feel very blessed to have had the opportunity to learn under them, and even more so that they would take the time to teach me.

As far as actual classes go, they're coming along fine, but I'm starting to feel the dreaded anxiety that comes with finals looming in the near future.  The time of completely checking out of life and dedicating every waking moment to studying will soon be upon me again.  This semester I've only had to use about half of my allowed absences (for most classes, you're only allowed to miss up to 7 or you don't get credit for the course).  This has been another big blessing, considering I had a sinus surgery and a PICC in for 6 weeks (and ugh, glad THAT'S over for now!).

Ok, I think that about sums up my most recent legal thoughts and ramblings.  Be back soon!

That amazing moment when...

...you take a shower for the first time after getting your PICC pulled AND the maintenance man fixed your water pressure the day before.  O, glorious morning!

Sinus Surgery #6 and Permission to Be Still

This past Friday marked my sixth sinus surgery in about 9 years.  Back when I was 17, the pulmonologist I was seeing at the time recommended I visit an ENT to get my sinuses checked out, not because I was necessarily having breathing troubles at the time, but just because he knew that tended to be an issue for several of his CF patients.  And boy, was he ever right!

At this point, it's pretty much agreed upon between myself, my CF team, and my ENT that my sinuses are the main cause of my breathing issues.  They just get so congested that infection easily sets in, then makes its way down to my lungs.  Once that sets in, it's a vicious cycle of airway inflammation and congestion that only the "big guns" (IV antibiotics) seem to really be able to knock out.

So, I've now had six sinus surgeries.  What I refer to as "the big surgery", aka the first one where the doctor created two new "windows" in my sinuses for better drainage, happened in summer 2004, followed by a much easier clean-out surgery that fall.  I had another clean-out + deviated septum repair in summer 2010, a basic clean-out while I was hospitalized in Feb. 2012, another basic clean-out in Feb. 2013, and the most recent clean-out this past week, Sept. 2013.

I was pretty disappointed at realizing I needed the surgery again so soon - it had been less than 8 months since my first one this year - but there was no denying it was time.  Nearly three weeks ago I had a PICC placed, but even after almost three weeks of IV Fortaz, it was obvious my sinuses were not going to be getting any better….and I know from experience that if my sinuses aren't good to go when I finish my antibiotics, any breathing progress I made during that round won't last long.

And so, I scheduled (yet another) clean-out surgery with my ENT for this past Friday.  It's all pretty routine at this point:  I know what to expect the night before, the morning of, and the afternoon after.  However, this time I was very surprised to wake up (coughing, of course) from the anesthesia with no gauze mustache taped under my nose.  Typically, I wake up coughing and all the recovery nurses flitter about because the coughing makes my nose start bleeding excessively and I'm sure it all looks very alarming.  This time, though, there was just the familiar coughing and sore throat from the breathing tube, and that unquenchable thirst for ice chips. (Sidenote, after my first surgery when I was 18, I distinctly remember getting a cherry slushie to soothe my throat in the recovery room.  Since then, at the various hospitals that have performed the surgeries, I always hope that cherry slushie will be waiting for me when I wake up, but so far it's just been boring old ice chips).  There was absolutely zero blood to deal with the entire recovery time, which was nice, but really weirded me out at first.

Apparently, since I did  just have surgery back in February, my frontal sinuses looked fine, so the ENT didn't do much work there.  Instead, he focused on cleaning out my forehead sinuses (which is done by sticking a catheter up there and flushing them with antibiotics), and some of the "deeper sinuses" (and I honestly have no idea what that means, exactly).  In the process of cleaning these out, my ENT just didn't quite feel satisfied, so he did some live x-rays while I was in there.  I'm so grateful he did, because these x-rays revealed a whole portion of sinus cavity that was filled with bacteria gunk but had been missed this time AND back in February because scarred tissue had covered it up, making it almost invisible.

So, the doctor drilled through that scarred tissue got the elusive area cleaned out for me, put a metal stint in my nose to keep the scarred tissue from covering the area again, and sent me on my way.  For now, I'm still doing another week of IV antibiotics, and am also doing my sinus rinses, mixed with powdered antibiotics, religiously.  I'm hoping and praying this is what it takes to really get my nose and lungs cleared out and keep me breathing easy for a long while!

Recovery time typically isn't an issue for me.  It's a day surgery, so I'm home by that night and usually feeling pretty ok by the next afternoon.  Heck, last time I had surgery, I went out and bought my wedding dress the next day! (not that I recommend this - I loved my wedding dress, but that situation could have turned out very badly)  This time, though, my husband put me under house arrest and told me I wasn't allowed to do ANYTHING all weekend.  It was time to rest.

At first I laughingly rolled my eyes a little but was willing to humor the request(/demand).  I am SO GLAD he made me stay home.  Life has been so busy and crazy the last few months - even after I had my PICC put in, I was back to work and school the very next day, with activities planned each weekend.  It was time to slow down, and while I was letting anesthesia work its way out of my system was the perfect time to embrace this idea of just being still.  We slept, we watched movies, we had meals brought to us by friends, and we went on fro yo outings.  I finally made headway with our wedding thank you notes (though it was argued by hubby that this doesn't exactly count as "down time"), and just generally enjoyed sitting around our wonderful apartment and being lazy.

A healing body and permission to be still are wonderful things.

 

No, thank you, I don't want your cough drop.

Being offered cough drops on a fairly regular basis from random people is probably an experience I have in common with many other CFers.  In high school, (since I'm 99% sure menthol-laced cough drops were illegal on school premises) friends and classmates would occasionally offer me peppermints or hard candies to suck on for my throat (usually accompanied by some sympathetic comment of "wow, you STILL have that cough, huh?").  In college, while working at the front desk of my dorm, a sweet foreign exchange student gentlemen from Singapore brought me a bag of cough drops and some un-identifiable asian "cold medicine" tablets that he swore made ANY cold/allergies/illness go away within 24 hours and was convinced I must need them.  I've had piano teachers, friends' mothers, and work colleagues come hunt me and my cough down when they're within earshot and give me a wink while they silently slip/force a cough drop into my hand.  In law school, I've had nameless classmates sitting next to me reach into their bags in the middle of class, then whisper "I have cough drops" as they offer me a smile and a handful of Halls.  The cake, though, might be in class tonight when the girl sitting in front of me, to whom I've never spoken and about whom I know nothing, turned around and, without making eye contact, plopped a cough drop on my desk, then turned back around to continue taking our quiz.  Umm….thank you?

In all honesty, my initial gut-reaction whenever this happens is to feel both sad and offended.  There's a part of me that cringes on the inside anytime my cough is acknowledged as something noticeable or abnormal.  Trying so hard to stay healthy and be "normal," only to have someone point out to you that there is something obviously wrong…well, it can be a tiny bit of a soul beating.

However, I absolutely realize that 99% of the time it is done out of kindness - people see what they perceive as a "suffering" and think they have a small way to make it better. (Or they really want me to stop making all those distracting coughing/throat clearing noises so they can concentrate on the class material!  Either way, I guess I can't really blame 'em…) And so, that initial gut-reaction of negativity has been trained to almost immediately give-way to the thought "They're just trying to be nice.  Now either accept or decline the cough drop, and either way, remember to SMILE and be GRACIOUS."

Over the past year or so, as I've really started to better embrace and accept the CF-patient part of my identity (and also since I've met and married the love of my life who accepts me exactly as I am, CF and all, which has given me way more confidence than I ever would have imagined) little things like the cough drop offers tend to roll off a lot easier than they used to.  The last two times it's happened, though, have caught me off-guard, because when they're offered I honestly am not aware of any coughing noises even going on!  The next-to-last time, it was right before a sinus surgery, and all I can figure out is that I must have just been clearing my throat a lot in class; tonight, I had to run across the parking lot and up a stair case with my heavy backpack to make it to class on time, so I was huffin' and puffin' and coughin' a bit when I first sat down.  All that had passed, though, by the time our quiz was passed out, and as far as I was concerned I was just sitting there quietly when the cough drop "drop and run" occurred.  After the quiz was over, friendly cough drop girl turned around and asked "You were the one that was coughing at the start of class, right?"  That at least made me feel a little better that she was referring to a legit coughing fit and that I wasn't subconsciously making a lot of weird noises in class that I wasn't aware of!

So, bottomline, yes, it hurts my feelings a little bit, but I understand and am grateful that people are just trying to help when they shove a cough drop in my face.  It's also taught me to consider how many times I might accidentally hurt others' feelings by innocently pointing out something that's a little "off" with them and be completely oblivious to the fact that I'm calling attention to a very sensitive aspect of their life.  In the end, though, we're all human, and we're all going to put our foot in our mouth at some point, whether we realize it at the time or not, so I think a little grace all around is needed here.

Internships and Housewife-ing (or at least attempting it)

Welcome to my-life-in-a-nutshell-for-the-last-three-(now-four-)months Part 2:

The day after hubby and I returned home from the honeymoon, I started my summer internship with the Immigration and Legal Services department at a (somewhat) local Catholic Charities office.  My real interest in the internship was to learn about refugee and asylee law, but I knew the job would include exposure to a much wider variety of immigration legal issues.  In the end, it was a great experience - having just finished an immigration law course a few weeks before I started, it was really cool to be working in an environment where I could observe how what I'd learned in class directly affects the everyday lives of so many people.  I was little disappointed at the lack of actual "legal practice" involved, though - this particular office doesn't provide any legal services that would require a lawyer accompanying a client to court or removal proceedings, or an asylum hearing.  Instead, the office primarily provides consultations to clients who are seeking some kind of pre-emptive immigration relief (meaning they haven't already been tracked down by ICE and are seeking some kind of protection or relief from future possible deportation).

*I've realized the next few paragraphs of this post are probably unbelievably boring to 99% of the people who will ever read this blog, but it's taken me so long to write it I can't bring myself to delete it.  Sooooo….IF YOU CARE TO LEARN A TAD ABOUT IMMIGRATION LAW, FEEL FREE TO READ EVERYTHING BELOW.  IF NOT, FEEL FREE TO SKIP TO THE NEXT *

Therefore, I spent most of my summer meeting with people who qualify for something called "deferred action for childhood arrivals" (DACA).  This is a piece of legislation passed in August 2012 that aims to give some temporary protection to immigrants who have been in the U.S. for most of their lives.  This typically ends up being children who crossed the border with their parents, usually before they were school-age, and have lived in the U.S. for nearly the entire lives.  The requirements (if anyone is interested) are that they have to currently be at least 15 years old; show they entered the U.S. before their 16th birthday; show they were physically present in the US on June 15, 2007 and have been continuously present in the US up to the current date; show they are either currently enrolled in school, have received a high school diploma or GED; show they are currently living in the US without lawful status; and show they have no criminal history.  Being approved for this form of temporary relief means that, while the legislation lasts (Congress can revoke it at a later date), a recipient will not be placed in removal proceedings (i.e. deported) simply because they are present in the US without lawful status.  This means if they commit a crime or some other deportable offense, they can still be placed in removal proceedings, and if they leave the country, they have no license to re-enter the United States - however, simply being in the U.S. "illegally" will not land them in immigration court.  This legislation also allows recipients to apply for a social security number, which in turn allows them to get a job, driver's license, etc.

I also had the chance to work with immigrants who had been admitted to the U.S. as refugees, and were now eligible to adjust/apply for their permanent resident status (aka their "green card"), and also with U.S. citizens who were ready to petition to bring over family members from another country.  I enjoyed meeting with these people and hearing their stories, and their cases were typically pretty straightforward and simple.  It's a little crazy, though, that people come in to start the petition process of sponsoring their parent or siblings so they can immigrate to the U.S., all the while knowing it will likely be at least a 7-20 year process.  It was a good reminder at just how blessed I am to live in a country with so many opportunities and so much affluence, and also a good reminder that not everyone gets to experience the same political and economic security I've known my whole life.

Additionally, I had the chance to work with some women who had been granted temporary relief status because they were either victims of a violent crime (U-Visa recipients) or domestic violence (relief under VAWA - Violence Against Women Act).  Both of these programs allow people to stay in the U.S. for a temporary period while they "get back on their feet," and the recipients are then allowed to apply permanent resident status after a given period of time, provided there is no criminal activity or other problems during that probationary time period.  I really enjoyed speaking with these women, and hoped that the few hours I got to spend with them preparing their files and applications helped at least a little in setting their lives on the right track to recovery and a better life.

Overall, immigration law is an extremely interesting field, and I wouldn't mind getting back into later on down the road.  It's such a complicated and codified process, it was nice to be in a position where I was simultaneously learning about the law and helping people navigate their way through our complicated system in their quest to obtain a rightful, legal status.  There were two main issues that made me decide I want to try something else for now, though - #1 - I don't speak spanish.  Like, not even a little.  And that severely limits how much direct contact I can have with clients in my area who are seeking immigration law advice.  #2 - I honestly don't have strong feelings about immigration policy and legislation either way.  I loved learning about immigration law - digging into legislation policy, however, is not something I've ever been interested enough to really research and form a firm opinion on.  This summer, I got to see how this is a topic that directly affects SO MANY people, and it really helped remind me that this is an issue that affects individual lives, not just a generic group of "other people" - aaaaaaand at the same time, it showed me that there are a LOT of people who feel completely entitled "work" and take advantage of our immigration and legal system, which was frustrating.  Given what I've seen so far in my new internship, though, I'm starting to think that's just a trend that nonprofit legal organizations see, no matter what field of law you are working in.  You just have to remember that along with the frustrating clients, there are also those who genuinely need, deserve, and appreciate the help.

*WELCOME BACK:

Thankfully my immigration internship ended with another month of my summer left.  Woohoo!  It was definitely time for a break, too.  Between the engagement, wedding planning, school semester, finals, moving, wedding, honeymoon traveling, then a full-time internship with 3+ hours in the car each day, my body was getting crazy rundown.  Over the next few weeks, I tried to balance a good amount of "down time" while at the same time finally going through all our wedding gifts, packing/moving/unpacking the rest of my stuff from my parents' house, and trying to "set up house."  During that time hubby and I also traveled up to DC for a long weekend with my family for my grandfather's memorial service in Arlington Cemetery.  It was absolutely wonderful - we got a few days to explore the city, followed by all my aunts, uncles, and cousins being in the same place to honor my grandfather's life and service to his country.  He was a colonel in the Air Force during WWII and beyond, and he had a full honor guard present at his memorial service.  It was beautiful, and we all knew he would have been extremely pleased.  After the service, the whole family headed to a french restaurant my grandparents used to frequent in the city, and we spent the night savoring some delicious french delicacies and sharing stories about my grandad's life.  My family has a strong french heritage and pride, which was primarily instilled in us by my grandfather, so this was an absolutely perfect way to wrap up a day/trip celebrating his life.

During the few weeks at home before school started back, hubby and I were finally able to get a little more "settled in" - curtains got hung, wedding gifts got returned/exchanged, our dish set got completed…it was a nice sense of accomplishment - but it still feels like there is so much to do!  It's hard to believe we've both been living here for over three months now.  I think it's about time I start getting some of these decorations up, or else it will be time for us to move again before they've even been put up!

That's about all for now.  There's more to update on now that school has started back and a new internship has started, but this post has already hit "way too long" status.  I'll include more of a health update in my next post, too (it looks like it's about time to cave and start another round of IVs - but you gotta do what you gotta do).

Be back soon!

Wedding and Honeymoon

Several rather landmark life events have happened in the past few months, and I figured it was about time to  honor them with a blog update!  So here's part one of my life in a nutshell for the past three months:

WEDDING - We're married!!!  It was hands-down the most stressful week of my life that culminated into what was truly the best. day. ever.  I took my last final of the semester on May 9, helped move my fiance into our new apartment on the 10th, then we walked down the aisle two weeks later!  We had SOOO many people help us pull our big day together that last week, and it turned out absolutely wonderful!

Yellow roses have a special significance for us (after intense and stressful deliberation, a single yellow rose is the flower hubby decided to bring me on our first date), so that was our theme and the only flower we used.  Lucky for me, the save-money-and-do-it-yourself-bride, Costco offers bulk-order yellow roses, so the day before the wedding 200 of those budding yellow beauties showed up on my doorstep, just waiting to be crafted into table arrangements, altar pieces, and bridesmaids bouquets.  However, being a save-money-and-do-it-yourself bride does not automatically make you a smart one, and prior to that day I had never actually assembled a wedding bouquet or table centerpiece in my life - but thanks to my mother, a good friend/bridesmaid with a keen eye for flowers, and rolls (ROLLS!) of floral tape, any impending (/deserved) flower crisis was averted.  The flowers were lovely, just like everything else about the day.  Celebrating with all of the family and friends that are dearest to each of us, all in once place at the same time, was a truly special and once-in-a-lifetime event.  People came from near and far - one of my bridesmaids flew in from Brazil, and my brother-in-law even flew in from China with his wife and their new baby girl a week before the wedding, and he served as the combination minister/best man at the ceremony.

Afterward, the party boogied down the street to the Cowgirl Museum, which my aunt, uncle, cousins, and numerous other awesome friends had decorated perfectly.  The upstairs galleries of the museum were open, so guests could wander around and learn all about the history of American Cowgirls while they waited for us to arrive. :)  I still laugh when I think about how random yet completely perfect the venue was.  The museum is beautiful, but the cowgirl influence is definitely present, such as cowgirl murals in the rotunda or the life-sized diving horse statue coming out of the ceiling and hovering above us in several of our dancing photos.  No matter though - it's just one more nuance that made it our own unique, special day. :)

First Dance photo - note the flying horse

HONEYMOON - The honeymoon was equally as awesome and amazing as the wedding!  The day after the wedding, hubby and I headed to the airport to catch a flight south to Belize.  We landed in Belize City, then hopped on a 15-seat puddle jumper to take us to the island where we stayed for the week, San Pedro.  Twenty minutes later, we landed in the San Pedro "airport," were directed to a van which proceeded to drive us and our luggage exactly two blocks down the road, and were then directed to wait at the nearby dock for the water taxi that would take us to the hotel.  The boat arrived a while later, and safely deposited us at the resort.

The shore of San Pedro is interesting, because about half a mile offshore is one of the largest barrier reefs in the world.  It's close enough that you can see where the waves are breaking against it, but far enough away that by the time the water reaches the shoreline it has hardly any waves or movement.  This means the buildings can get extremely close to the shoreline because the water is always so still.  Our room was on the second floor and right on the beach, about 30 feet from the water, and it was absolutely gorgeous.  In addition to the beach, the resort had two different pool areas, a swim-up bar, and a "jumping rock/slide" that was fun but absolutely would not pass safety regulations in the U.S. (let's just say the water was a tad shallow for unsupervised two-story diving...).

Our week in Belize was a perfect blend of relaxation and exploration.  Several days we just hung around the resort or headed into the main town of San Pedro to walk around, and other days we opted for more adventurous outings.  It just so happened that my birthday fell during our honeymoon week, so hubby let me choose an "exploration adventure" offered by the hotel.  I opted for the Mayan ruins/cave tubing tour, and it was seriously one of the coolest things ever!  We took another puddle jumper back to Belize City, then took a 2 hour (extremely bumpy) bus ride into the mainland to reach the ruins of Xunantunich near the Guatemalan border.

Sidenote:  I've started to realize as an adult with CF that there are many small victories to be celebrated in the process of aging.  I often catch myself in the middle of groaning about unpleasant symptoms of "getting old" (such as the increasing number of gray hairs popping up all over my hairline!), and suddenly feel a secret little thrill that I am alive to experience such a thing.  One such moment was when, on my 27th birthday, I climbed a Mayan temple with my husband on our honeymoon.  I wasn't expecting any sort of surreal or existential moment while we were at the site, but while standing on the top of the pyramid, all the wonderful and significant pieces that made up that moment became clear, including all the little jokes and teasing about "being old now," and my heart was filled with joy, a little pride, gratitude, and determination for the future.

View from the balcony

Our resort (on a windy, rainy day)

The Mayan temple

View from the top

Waiting for the water taxi

After the ruins, we took an even bumpier road into the rainforest, which led us to a river that flows through a series of caves.  Armed with innertubes and miner's hats with head lamps, we jumped into the river and followed our guide through the pitch black caves.  After that, we headed back to the resort where hubby had arranged a surprise birthday dinner on the beach for us, right in front of our room!  The next morning he woke up early to make me breakfast, presented me with a new Bible with my new married name engraved on the front, aaaaaaand surprised me one more time by ordering a private couple's massage on our balcony.  Have I ever mentioned that he kind of (ridiculously) spoils me? ;)  He's always sworn he would never get a massage, so ordering this was a true testament to how much he loves me.  I thoroughly enjoyed the massage, but he found it simultaneously awkward and boring, haha.  Oh well!  At least he finally tried it! :)

Leaving Belize and heading back to reality was tough, especially since we started back to work only a day after we got back.  But we were also pretty stoked at the prospect of starting "real life" together.  We're still definitely in the lovey-dovey newlywed stage, but right now I'm more than ok with that. :)

Mail-Order Pharmacy Woes

Mail-order pharmacies are great for people like me who have long-term medications they will need filled on a regular basis for the rest of their lives.  Dealing with mail-order pharmacies, however, continually leaves me wanting to bang my head against the wall.

In January 2012, my doctor wanted me to try out Cayston.  I agreed, and so the order was sent to the CF Services Pharmacy (I think they were(/are?) the only pharmacy that was carrying it or something.  Anyway, I was very impressed with the pharmacy and with how quickly I received my medicines, so over the next few months and doctors visits, I gradually switched over all of my prescriptions to their pharmacy.  And it was great - the service was always awesome when I called, they were friendly and helpful, and my medicines always arrived extremely fast.  There were two downsides, though:  one is that they didn't do 90-day supplies.  The second is that I knew they were a little more expensive when it came to a few medications, but the service was great and I was too busy/ignorant to really look into how MUCH more expensive they were.  Finally, about a month ago, I sat down to really start sifting through some insurance claims (which is a whole other "facepalm" rant - the amount doctors offices and hospitals routinely overcharge people because they don't run the insurance correctly is ridiculous - and they don't pay that money back until you call and bring it to their attention!  If you don't already carefully compare what your doctor's office says you owe for a visit to what your insurance claim says you owe for that visit, I would start incorporating that habit into your routine, pronto!  Because of all the visits surrounding my sinus surgery earlier this year, I was overcharged about $1400 from various doctor and hospital visits just from January to March - but thankfully, after multiple phone calls, all that money has since been reimbursed), .......where was I?  Oh yes, so I sat down to really go through insurance claims, and in the process realized how much money I would save if I used my insurance's preferred mail-order pharmacy, Medco (or ExpresScripts, or whatever they're called now).

And so, when it got to the time that my medications were starting to get low again, I called the doctor's office and asked them to send all new scripts to Medco.  And since then, all I can say is ARGH.  I'm trying to keep in mind that they're saving me hundreds of dollars each year, but they're just so slow compared to CF Services, and getting ahold of anyone to talk to takes forever.  It basically takes 8 days from the time a doctor calls in a prescription for them to fill it; then, if there is any kind of issue along the way, a lot of times that 8 days starts all over again.  And then it can take another week to actually arrived from the time it's processed and shipped.  Maybe I just got spoiled working with a smaller specialty pharmacy - is it normal for mail-orders to take this long?

Sorry if it seems like I'm complaining.  I'm just frustrated after multiple conversations with them about billing and filling the orders, and now they're saying that prescriptions called in on April 9th might not get here until the 30th.  I tried to plan in advance for these meds, but I didn't plan enough ahead that waiting three full weeks for them will be ok.  I'm now remembering this happening multiple times in years past when I have used them.  I guess using the big mail-order pharmacy again is just going to take some getting used to.

40 Day Countdown to Wedding Bells and Therapy Compliance!

Whoa!!  We officially have only 40 days to go until d-day(/wedding day)!  And THAT means only 41 days until we arrive in Belize for our honeymoon!  All along, I've wanted so badly to feel awesome for both our wedding day AND our week out of the country.  I've tried to stay on top of all my meds, treatments, exercise, etc., but that honestly hasn't panned out too well this semester.  My albuterol treatments and steroid inhalers ALWAYS get done, at least twice a day......but my rules for "always" doing hypertonic, pulmozyme, and TOBI get fudged a bit (and yes, I know, fudging on the TOBI is an especially bad idea).  My Vest is nicely tucked away in its corner...and, I'm ashamed to admit, has been sitting there long enough I can't tell you the exact day (or even week) that I last used it.  Intentional exercise, however, has happened!  Yep, I've been to the gym exactly three times since the beginning of March.

Ok, enough self-deprecation.  The point of this post is to celebrate 40 days until I marry my honey (yay!) and also to declare the challenge I've set to myself to do every single treatment between now and the wedding.  Can I do it??

Probably not.  Which is why I'm setting my goal at a still-high-but-more-realistic goal of 90% treatments each week.  The number of prescribed aerosol treatments I do each day is 8, plus at least one Vest treatment (I'm not including inhalers in this count because I never have a problem remembering to do those).  Soooo, that comes out to a total of 63 treatments a week.  Which means I'm allowed to skip no more than 6.3 treatments in a seven day period.  And since I don't imagine that .3 of a treatment will ever be a real issue, I'll go ahead and say I'm allowed to miss no more that 6 treatments a week.

Here we go!  Here's hoping for an awesome, deep-breathing, completely relaxing and memorable last week of May 2013!

Zumba

Went to my first Zumba class today.  New goal in life:  complete a Zumba class.

It's inspiring but also a little embarrassing when you're surrounded by grandmas who last longer than you do while dancing salsa and oppa gangnam style!

Also, we picked up my wedding ring today!  It's dainty, shiny, simple and perfect.  So excited to start wearing it forever in less than two months!!  Now we just need to get that groom's ring ordered . . .

Feeling better (I think?) and Ridiculous Beauty Measures

Last week I had my second appointment in a series of laser hair removal treatments I purchased at the start of the year in anticipation for the upcoming wedding and honeymoon (yay for Groupons!!).  As I was leaving, I actually laughed out loud in my car as it struck me just how absurd the torture "pampering treatments" are that we put ourselves through in the name of beauty (especially wedding beauty).  I essentially paid someone to let me come to their office and have them scorch my hair and skin repeatedly with a laser shock . . . then I went back and had them do it again!!  I don't know how many of you out there have tried laser hair removal, but I actually really really love it so far.  If you have darker hair like myself, I really do think it is worth the investment (especially if you find one of those groupons for like 70% off).  However, there is one warning I feel I must give, and that is that it hurts.  Like, REALLY hurts - about like you should expect it would feel when someone zaps your skin with a laser shock - but it only lasts for 2 seconds, then the pain is 100% gone.  I wasn't expecting that the first time, so it was a bit of a shock (pardon the pun).  In fact, the first time I went was the same day I had my PICC line put in, and I'm almost positive the laser treatment session was more painful than the surgery/line placement, haha.  And yet, I feel like I weathered the laser treatment much more bravely.  I guess choosing to endure a little pain for the sake of feeling pretty is more fun and easier to handle mentally than feeling forced to endure a little pain for the sake of making sure your lungs start working properly again soon (I've tried to find it, but there's just not a lot of fun in that).

Speaking of which, the PICC has officially been out for over three weeks now, and the result is............I'm feeling better!  I think!  It's hard to tell!  Refusing to go into the hospital had its perks because I wasn't exposed to a lot of extra germs and I didn't have to miss much school while doing my IV treatments.  But, on the down side, that also means I wasn't as dedicated to fitting in all the extra breathing treatments I probably should have.  Even so, once the line was pulled, I was feeling pretty great; that is, until I picked up a lovely cold virus!  Yep, a week after finishing up my antibiotics, I woke up with a weird but intense head cold that then moved down into my chest, where the effects have lingered.  And lingered.  Luckily, so far I haven't really felt short of breath at all - just continual congestion.  When considering what's normal for my body, this is probably a pretty good sign that it's still just icky cold germs that haven't fully moved out yet, and not a newly-fueled lung infection.

Which segues nicely into one last, brief topic.  Like many CF patients, I'm sure, I often get asked whether or not it hurts when I cough (and, if they don't know I have CF, the question is almost always followed with a recommendation for some great natural therapy or throat lozenge they've recently discovered).  I don't know what the typical answer would be amongst the CF community (or if there even is a "typical" answer), but my answer has honestly always been "no."  Yes, I cough a lot, and sometimes it is a deep, body-wracking cough, and occasionally my throat may get a little irritated or hoarse, but for the most part there is no pain associated with the cough itself.  When I get a chest cold, however, that totally changes.  When it's a cold virus irritating those little airways, it burns every time I cough.  And I am always left feeling so extremely grateful that it doesn't hurt like that all the time!!

In other, quick news:  wedding plans are still coming along, though I seem to have hit a wall on decision-making about two weeks ago.  I try, but no coherent decisions or commitments are surfacing in my scrambled little brain these days.  School is still going pretty well, but as finals loom nearer and nearer (only about a month away now), I'm starting the feel the pressure from those little reading assignments I've led slide this semester.  It's just about time to batten down the hatches and ignore the outside world for a few weeks while studying for finals consumes my time and life . . . hopefully I can stick to this brutal yet tried-and-true system of surviving a law school semester despite the fact that all the wedding plans will still be hovering in the back of my mind 24/7.  I've been trying to work out an extremely detailed schedule for each day of the week that incorporates (and reminds me of) every single thing I need to do for my health (including treatment times and going to the gym - i've even scheduled in times to take my pills!), studying for school, and preparing for the wedding.  Hopefully it helps keep me on track.  If anyone else out there has a great way of balancing all their health, school/work, and extracurricular needs, I'd love to hear about it!

The Problem with PICC Lines

Ok, so the title of this post might be a little misleading.  There are, in fact, numerous problems/nuisances that go hand-in-hand with having a tube sticking out of your arm.  For instance, you are unable to shower without suiting up your entire upper arm in layer upon fashionable-but-oh-so-stiff layer of Press-N-Seal saran wrap, followed by a ziplock baggie with the bottom cut out, which is then held in place with several rounds of waterproof medical tape (and, after all that, it still only seems to work about 1/2 the time!).  Another, more minor, example of a problem that arises when medical tubing is protruding from your body is the fact that, well, it hurts!  Along with the puncture site, there are the tube clips that dig into your arms when you try to cover the area with an ace bandage or some other kind of "sleeve" to keep all the tubes from dangling everywhere anytime you move.

Along those lines, I find the specific "problem" I'd like to address tonight (a/k/a the one that's currently bothering me):  the adhesive bandaging.  Up until today, I have actually been extremely impressed with how well my body has adapted to the PICC line and how little I've noticed it's there.  Again, it's kinda hard to miss a tube coming out of your arm, but the position of the line and the bandaging have all caused minimal discomfort or interference with my daily life.  Until today.  The home nurse came today to take blood samples and the change the dressing (even though that really wasn't necessary since they did it in the hospital on Friday).  While changing the dressing, she specifically asked me I'd like the tubes pointing upward or downward, and I said I'd like to keep them upward.  However, perhaps because we were chatting too much, she ended up doing the complete opposite:  the tubes are pointing downward, right into the crook of my elbow, and the tape from the adhesive bandage is also in my elbow crease, which means I can't fully extend my arm.  Furthermore, something about the way this bandage was put on feels like it is uncomfortably pulling on my skin no matter if I try stretching my arm out or bending it in.  Argh!  The bandage that was on before today was perfect - it was placed high enough that it did not restrict my arm movements and the adhesive wasn't so strong that it was already causing skin irritation.  I hate to bother her again, but this just won't do.  All I can focus on is how uncomfortable my arm is - this simply will not fly for another week, so I'll be calling her in the morning.

Ok, and now as a closing note, I want to acknowledge how amazing PICC lines.  The initial insertion of the line is a bit painful, yes, but not nearly as bad as needing to have a new IV put in every few days!  And beyond that, it allows those patients who otherwise have no need to be in the hospital to leave the hospital and conduct their intravenous treatments at home.  It allows you to continue with your normal life, whether that is at school, work, chasing your small children,or  buying your wedding gown.  Plus, and perhaps most importantly, PICC lines can make you feel better almost instantly!  I have now been on IVs for merely a week, and can already tell that I feel stonger and have more energy and breath to laugh with my family and fiance.  Though a pain to keep up with, these home IVs cold great power to heal.

And now, fellow CF-patents and friends - does anyone else out there have a PICC right now?  What is "the problem" that is bothering you this time?  Also - does anyone have a good way of getting residual adhesive sticky off of my skin?  Any advice would be appreciated!

Love.

I just have to take a moment to brag a little that my almost-husband is an amazing man.  In the past week, he has unexpectedly taken two full days off of work to be with me at a doctor's appointment for a PICC line placement, and then again for sinus surgery, and then made that time up by going in on a Saturday; he has driven across town multiple times to pick me up/drop me off at my house, and driven me to a pre-wedding beauty appointment when I couldn't drive myself but was too stubborn to admit defeat; he has held my hand in the pre-op room and made me laugh an unseemly amount for someone about to go into surgery; he has tenderly changed bloody bandages from under my nose, and patiently listened to my drug-induced Downton Abbey ramblings; he has somehow made me still feel pretty even when I have no make-up on, am sporting a hospital gown, and have gauze taped under my nose; and, perhaps most telling, he very willingly skipped out on a superbowl party so that he could instead watch it with me(/beside me) on a smaller tv while I looked at flower girl dresses on Amazon.  This was his first real go-around with the uglier side of CF life, and while I could tell he was a little nervous about figuring everything out, he did an amazing job.  I am blessed, and I am so excited to marry you, Mr. B.

Prepping for the PICC Line

I'm currently sitting in the day surgery waiting room, "patiently" awaiting my turn to be led to a sterile room for an ever-exciting PICC line placement. I've had a four PICCs in the past, so this ain't exactly my first rodeo, but I still get a few nervous flutters thinking about the procedure.

A few weeks ago, I found myself in the position of not feeling BAD, but still not feeling great. After some debating, I decided it was time for some type of action before things really did get BAD (this proactive stance is actually pretty new for me). In the past, the source of most of my sickness and lung infections has been in my sinuses. SO, I decided it was time for the same surgery I had a year ago to clean those suckers out, coupled with a few weeks of IV antibiotics. This seemed to be the winning combo last year, so I'm hoping and praying it'll do the job again this time.

And so, here I am, waiting for the PICC people. I convinced my doctors that a hospital stay wasn't necessary, so both this procedure and the sinus surgery will be done as an outpatient. Come to think of it, I've never had a PICC put in when I wasn't already in the hospital...I'm hoping I'll be good to go as soon as it's done, because I have a lot of other things to get done today! We'll see.

Ok, now it's time to relax and get to my "happy place" before they come to poke at me. First, though, I'm going to spend a few moments lamenting the fact I didn't wake up early enough this morning to enjoy one last "normal" shower! :(

We Have a Date!!

Having just gotten engaged a few days before Christmas, and wanting to get married by the end of May, these first three weeks of January have been a crash course in wedding planning.  Why, you may ask, would any sane person attempt to plan a wedding in less than five months whilst also attending law school, looking for an internship, and trying to get as healthy as possible for the wedding/honeymoon?  I no longer have a clear answer for that, but here's the original idea: Given my school schedule, we're limited to either a Christmas or summer break wedding.  We actually both always wanted a Christmas wedding, but neither of us wanted to wait a whole year to get married, so that leaves summer.  And the climate where we live does not make for a very enjoyable wedding during July or August (that's actually putting it mildly; walking around in multiple layers of a floor length gown in 100+ degree temperatures sounds downright miserable), so that leaves June or late May.  Aaaaaand, apparently a lot of people like to get married in June (who knew?) so many places were already booked up for the month when I started looking on January 2.  But, after many inquiries and a few painful weeks of brainstorming . . . we have a church for the ceremony AND a reception site!  Hooray!!

Getting married in a church or chapel was pretty high up my list of priorities, but finding one turned out to be a lot harder than I'd thought.  The church Fiance and I attend is a good 45-50 minute drive away (plus it's in a renovated Alberston's - not exactly the pleasing aesthetics I'd always imagined for my wedding pictures), so we decided to try and find a place closer to downtown.  A little tip for any future brides out there to keep in mind:  many churches won't let you use their facilities unless you're a member, and if they do, they'll probably charge you twice as much!  The first one I get - the second one really bothers me.  But that's a story for a different time.  Anyway, to cut a long story short, we got permission from my old church/my parents' church to use their chapel even though we're no longer members, which is GREAT news!

The next obstacle was finding a reception venue.  Fiance and I are both from this area, so we both have LOTS of family and life-long friends to invite to the wedding - and beyond that, we both really want all of them there, so skimping on the guest list won't happen.  However, we're also on a budget (another tip for future brides: weddings are expensive!!  Even with a lot of DIY projects, it's amazing how quickly things add up!), and with 150+ expected guests, you have to find places to cut back on costs and get creative, and food/reception site rental is definitely one of them.  And that, my friends, is how you end up renting out a Cowgirl Museum for your wedding reception.  Yep!  It is totally random, and that somehow makes it completely perfect for us!  Haha.

And so, the big wedding date is officially set:  May 25, 2013!

The Need for a Blog

Why blog?  I can say with 100% honesty that until a few months ago, the thought of a writing and keeping up with a blog was not even on the radar of ways I'd like to spend my time.  I'm a law student, planning a wedding, trying to keep a social life, and dealing with cystic fibrosis - life is busy. And while I spend my fair share of time on the internet, the thought of spending time reading about other people's average, everyday lives rarely sounded appealing; and beyond that, I certainly couldn't think of anything about my own life that would be worth writing about or that anyone would ever care to read.

Meanwhile, I had spent a majority of my life squashing my CF, the chronic genetic disease I was born with, into a tiny corner of my life.  It was there, I knew it wasn't going away, and I knew I had to acknowledge it a few times a day by taking my medicine when I ate, and doing treatments to keep my lungs clear.  Aside from that, however, I had no interest in learning about the disease nor connecting with others who might be going through similar struggles.  By ignoring it as much as possible, I felt I was leading as close to a "normal" life as possible.

And then something happened. It would seem the "grown up" voice of reason inside of me finally got to have her say.  As a 26-year-old female with CF, considerations about my health and my future are now a bigger part of my life than ever before - and perhaps the most pressing of these current considerations is the possibility of one day starting my own family.  With that in mind, I wanted to learn more about women with CF who are having children.  And I didn't want statistics from research studies or medical journal articles. While these numbers and facts can be helpful, I always feel a bit of a disconnect between me and the author when I read them.  Receiving information about something as personal and emotional as having children from someone who does not have CF but merely studies it and reports their objective observations just doesn't cut it for me.  I wanted to hear from actual CF moms - I knew they were out there, but had no idea how I would ever be able to contact them or learn from them.

So, because I had nowhere else to start, I solicited some help from my trusty friend Google.  On a whim, I started typing in keywords:  CF, mother, pregnancy, blog.  Lo and behold, such things were out there!  And not just one or two, but several, written by women from all walks of life, and with varying degrees of CF progression and complications, but all of whom were moms (or trying to become one!).  From there, I was led to the CF Blogroll.  This was the true gold mine!  So many CF bloggers out there, with so many stories, so many pieces of advice, so many struggles, and so many triumphs.  I have never in my life felt so connected to the CF community, and I absolutely love what I am finding out.  All of us have different stories, yet all of us have started from the same challenge, and share a connection the non-CF world cannot understand.

It has been so fun, so encouraging, and so enlightening to read the stories and musings of everyday life from these fellow CF patients - quite a change from how I felt about reading any kind of blog even three or four months ago.  I have found a wealth of information about all kinds of topics that interest me, from starting a family, to new treatment options, to ideas for crafts, cooking, and decorating!

So, back to my original question:  why blog?  I've been thinking about what I could possibly offer to the world that hasn't already been done in another blog before me.  To be honest, there isn't much - but I can certainly try!  One hole I discovered when researching CF blogs was a substantial (if not complete) lack of blogs from CF patients who are also lawyers or law students.  It may be a tiny niche, but I know we're out there!  And so, the decision to create this blog was born.

There is one thing I truly desire in this life, and that is to bring glory to God.  This calling looks different for us all, but there are three significant ways my own heart feels called to strive for this:  1)  To love my (soon-to-be!) husband completely, deeply, selflessly and graciously, and to start a family with him.  2)  To be a lawyer, and to use my knowledge and position to help those in need.  3)  To stay healthy. I cannot serve, and I cannot love long and deeply if I do not take care of myself and my lungs.  Thus, the title of my blog:  Breath.  Love.  Justice.  These are the topics on which I will focus in my writings, and I look forward to seeing how all of them develop and what kind of truths are in store in be discovered!

Thank you for reading.  I hope that what I have to say here will someday help and encourage someone else the same way I have been helped and encouraged by the blogs of others.  Stay tuned!