Generic Update (Brand Name Not Medically Necessary)

I have started drafting so many different posts with so many different themes over the past month - really, you would laugh to see how many awesome title's I've created that have nothing but blaring, blank, empty screen space behind them.

And so, seeing as I can't seem to commit the time to writing enough on any one of those topics to do them justice, I figured a general, bland update would be the best course of action for now. :)  Sorry I don't have something more profound to offer at the moment...

First things first - I've been out of the hospital for about a month and half now.  The stay ended up being a lot longer than I anticipated (though that's mostly my bad...when has a hospital stay ever ACTUALLY only been those "4 or 5 days" the doctor promised you when you agreed to be admitted?) and I was there a full two weeks.  That meant missing several classes, but thankfully toward the end I was able to conspire with my RTs and nurses and plan my daily schedule around some "long walks" I wanted to take at certain times of the day (aka sneak out of the hospital and go to class, then come right back to my hospital room, haha).  One reason law school is tough is because the American Bar Association will only let you miss up to 25% of classes each semester, or you don't get credit for your course.   So when it became clear my "5-day weekend" stay was going to stretch into something more like 12 to 14 days, I made it clear I wasn't going to accept missing all those classes. I'm grateful my doctors, nurses, and RTs were willing to work with me to "turn a blind eye" when I needed to sneak out for a little while.  Thankfully my school was only like a 5 minute drive down the road, so I was never missing more than 1hr. 45min. at a time.  I guess this is a great place to also mention how grateful I am that my hubby and my mom were willing to participate in this temporary escape plan and act as my getaway/delivery car drivers. ;)

The hospital wasn't awful but it definitely wasn't fun.  It turns out my pseudomonas has decided to procreate and produce a few new strands over the past few months, two of which were resistant to two separate panels of antibiotics.  I'm not gonna lie, that news really freaked me out, and unfortunately my doctor was out of town the first 10 days I was in the hospital, so I felt pretty lost.  The other doctors that stopped in wouldn't really commit to telling me much information, which made me feel pretty scared and desperate.  Eventually an ID (infectious disease) doctor came to see me and started me on IV Colistin, as well as inhaled Colistin.  That was a whole other traumatic story, but I'll save it for another time. (woohoo!  don't get too excited now, you know my blog updates are sporadic at best...)  Bottomline, something started helping me get better, though my PFTs never skyrocketed into the range I wanted them to end up in after two weeks of IV antibiotics.  This recovery has definitely been a slow climb, but as long as those PFT numbers keep going up every time I go in to blow, I'm satisfied, even if it's only 1 or 2 points at a time!

So, now that I've been home for about a month and a half, I am like a new person when it comes to therapy compliance.  This last hospital stay/exacerbation really freaked me out, and I am determined to FIGHT with all I have to get all those PFT numbers back!  I have been extremely compliant with ALL of my therapies (there are the occasional slip ups, due to a late start in the morning, a day too busy to come home and do an afternoon albuterol treatment, or falling asleep as I do my treatments at night...but for the most part I've been nailing it).  I've also started exercising.  It's been a slow beginning, but I'm trying so very hard to build up my strength...and it's working!  My new routine is to get up with my husband about 5:00 am on M/W, get all my treatments done, walk/run on the treadmill for 20 minutes, come back to shower and eat, then be at work by 8/8:30.  On T/Th, I've started boxing classes - they are so much fun!!  I'm definitely the scrawny little girl in the back, trying to keep up with everyone, but all the trainers are very encouraging, and while they push me to try hard, they know to back off when I hit a point I need a "breather" (which, let's be honest, is about 4x as often as the rest of the people in our class!).  I really love it, and I feel so much better than I did two months ago.  It's encouraging to feel my body getting stronger even after I leave the hospital and stop the antibiotics.  I hope and pray this keeps up for a long while!

Other than health stuff, life has been super busy for us - I'm wrapping up my next-to-last semester of school EVER, working 16 hours a week at Legal Aid (where I've been able to prep and participate in several trials and hearings recently - so much fun!  and so much work...), and, most exciting of all......

WE'RE BUYING A HOUSE!!  Yep, our very first house.  Neither hubby nor I have been a homeowner before, so this has been an extremely steep learning curve, but we are set to close on April 15, then move in on the 18th.  We are exhausted, but just pleased as punch about our cozy new digs in an historic neighborhood just south of downtown. :)  It's a really old home, built in 1921, but the inside has been completely redone, which means it should be safe for my sensitive little lungs (no excessive dust, mildew, or mold for me, thanks!). It's little, about 1400 square feet with only one bathroom, but it is just so perfect for us; plus it has been a ridiculously cool experience how God has led us through this home buying process to this particular community and house.  Hopefully I'll get around to writing that story in a future blog, too. ;)

So, here it is - yes, we have a front porch, and yes, that is a chandelier hanging from it, haha.  It's the little quirks like that that made me fall in love with it so quickly.

Ok, I think that's all the big updates for now.  Thanks for reading, and I'll try to have some more updates/musings posted soon!

Time for a Hard Restart

Over the past few months, I've brought up to my husband several times how I wish I had a restart button.  Not for life in general - I absolutely love my life, in fact - but just for my body and my health.  I wish there was a hard reset button I could push, let my body "shut down" and then reboot at baseline.  I wouldn't expect perfect health after the reboot - no perfectly sculpted abs or 100% lung function.  I would just like to find myself at baseline, with the lung function I had a year and a half ago, no active infections, all the built-up mucus cleared out, and able to exercise without it seeming futile and like I was fighting a losing battle.  CF wouldn't be gone, but through the process of just "rebooting" I could start over again with a clean slate.

It's a nice thought, this idea of a bodily restart button.  And I wouldn't be unreasonable in my request - I think it would be completely understandable if we only got a certain number of "hard resets" to use during our lifetime.  I could always have it as an option, but would have to be wise in deciding when to use it.  (that seems like a reasonable deal, right?)

But, alas, as much as I could hope and pray and wish and beg for it, no such button exists.  I'm coming to except that the closest thing to a "reset" button in my life is a hospital admission where I hit my body and my lungs with everything medicine and rest and prayer can do for it.  And that's where I find myself today.

This is only my 3rd hospital stay since I was diagnosed at age 2, which, considering I'm now pushing 28 (?!) is not a bad run.  I've more or less conquered my fear of hospital admissions that plagued me the better part of the past 25 years (more on that history later), but when it comes down to it, making the call to go into the hospital is still an incredibly difficult one.

I've known for about a year now that my lung function, though not awful, could definitely be better, but I just couldn't quite get where I wanted to be, even after two rounds of home IVs and two sinus surgeries.  As I saw and felt yet another downward trend in my lungs over the past few months, I knew a hospital stay was probably looming in the not-so-distant future.  As I mentioned, the concept of going into the hospital no longer terrifies me and I can think about it as a practical matter.  When it comes right down to it, though, once I'm actually faced with packing for a stay, telling my doctor "yes, admit me," and settling into my hospital room, I'm still hit with a bit of an emotional shock.

Besides the general fear of "will this work?  will I get better this time?" that lingers in the back of my mind, there are lots of other little things that can unexpectedly disrupt my emotional balance.  For instance, this hospital stay marks the first time husband and I have been apart at night since we got married.  It's a little thing, but it's hard not be resentful that this stupid disease forced us into that "first."  Closely behind that resentment follows feelings of guilt that I'm putting us through this, and that I didn't try harder to stay on top of my treatments and out of the hospital.  Then there comes the second wave of resentment that this guilt and these issues have to be a part of our lives at all, and the pity party cycle goes on and on.  But (as with many aspects of chronic illness, I think) after a night of crying myself to sleep I woke up "over it" and a little stronger for the experience.

I've been in the hospital for a week now, but hope to be headed home today or tomorrow.  There was talk about another sinus surgery while I'm here, but I talked to the ENT today and he said he wouldn't go in for surgery again just yet.  He said my sinuses are still "relatively" clear, and that we should just try to fight the infection that's there with antibiotics, and if things don't get better, then maybe surgery.  This is not my favorite answer, but I guess it's what happens when you agree to go to the hospital before things get really rough with your health.  While I'm here, I'd like to hit everything with guns blazing, including getting my sinuses completely cleaned out - but, when some health issues are just so/so, I find the doctors reluctant to commit to hardcore therapy.  I hope this doesn't mean I'll just land back in the hospital three or four months from now with more infection because my lungs got cleared up but not my sinuses.

But enough with the negatives and on to happier thoughts!  I love how the Lord also uses these times I spend in the hospital to encourage me and pull my heart toward Him.  I enjoy talking with all the nurses, and PTs, and RTs about life, law school, families, the Olympics, whatever (though, admittedly, it sometimes feels a little awkward when the nurse or RT is in the room for treatments and I feel obligated to turn on the TV or something for some noise when I'd really rather just sit and read or work!).  It delights me when conversation naturally flows into a discussion about faith.  It's also been a neat time for me and husband to be loved on by our home group from church.  Being in the hospital also presents PLENTY of time to just sit, read the Scriptures, study, and pray.  Most importantly though, I think, is the renewed sense of dependence I have on Him - in this crazy life there is so much out of my control, and I honestly don't always do so great managing those few things that ARE in my control (ahem, exercising and therapies…).  But I can sit firm in the knowledge that He loves me, He seeks my heart, He teaches me, and He provides for me, no matter how many times I screw this up.  Time and time and time and time again He has shown this.  What I cannot control, He holds in His hands;  what I can control (exercising, therapies, etc.), He can give me the strength to pursue and persevere.  And ultimately, all this is part of His grand design to work all things to His glory.

So, there's my update for now.  Hopefully by the next blog I'll be back in the swing of things!

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.