Friday, January 8, 2016

2015 - One of the Best Years Yet

2015 in Review.

All in all, 2015 was a pretty amazing year in my little world.  I have been an abysmal blogger this year, but that doesn't mean there wasn't lots going on.  So here is a little recap of what the year looked like!

I hesitate a bit to publish this kind of post.  The reason is because I know a large portion of the people who read this blog are CF patients or family members of CF patients, and collectively we ran the full gamut when it comes to health and statistics in 2015.  While this happened to be a fantastic year for me, there are many out there who had an incredibly difficult year, and then again many others who fall somewhere in between.

Sometimes when I'm going through a rough health patch, reading or hearing about how "great" a fellow CFer is doing can make me sad and, honestly, stirs up feelings of discontent and envy in my heart.  That is NOT what I want to accomplish here.

Because, oftentimes, reading those enviable posts where I see a fellow CF patient thriving while I struggle also gives me inspiration and hope.  It's a reminder of possible better days, and gives me a little extra drive to work toward gaining those easier days once more.  It makes me even more determined to do whatever it takes to get them back.

To put things in perspective, 2014 was a rough year for me.  Like, a really REALLY rough year.  I was hospitalized multiple times, learned my bacteria strains were nearly pan-resistant, and had begun to seriously question what my future could possibly look like.  I started to convince myself that my traveling days were over, which was an incredibly difficult emotional hurdle seeing as traveling is one of my biggest joys in life.  Even harder, though, was when I began to question whether all this back-breaking work I'd put in at law school would ever amount to anything, because I began to seriously doubt I could ever hold down a job as an attorney with my health so unpredictable.  And this time last year, as I read posts from other CF bloggers discussing how amazing 2014 had been to them, it was hard not to be a little (ok, a lot) jealous.

And yet, there was a silver lining to reading those posts, as well.  Hearing about other people's good years reminded me of tough years I've had in the past, followed by amazingly healthy and happy ones.  It pushed me to work a little harder to make 2015 a better year than 2014.

And so, keeping in mind that many people out there had a rough year in 2015 and are more than ready to bid it "adieu" and "good riddance," I present to you a recap of my own highlights of the year.  Ultimately, I hope that this post serves as a reminder to those who struggled in 2015 that this disease we fight is often unpredictable.  We will have good days, months, even years - and we will have bad ones, too.  But during the bad times, don't lose hope, and look for inspiration wherever you can find it.  For me, when that next round of "bad days" comes along (and we all know they will eventually come back around), I hope this post will serve as a reminder for me of the possibility of good days yet to come, give me that little extra "oomph" to keep fighting, and remind me to be at peace with whatever season it is God has placed me in at that time.

So without further ado, here is my 2015 in Review:

January - Bar Exam Prep.  Literally, that's the only thing I did all month.  I barely saw my family, much less my friends.  Early in the month, I had an old PICC line pulled that had been placed when I was in the hospital in early November.  Knowing I am prone to get sick in the Jan/Feb season every year, I asked to keep the PICC in until I'd finished the bar exam in Feb.  My docs consented, and I even did a second round of IVs in late December because I felt I was starting to slip a little and wanted to be in top-notch health while I studied.  However, once that round of IVs wrapped up in early January, I decided I was done keeping up with the PICC line, and my docs agreed it was best to pull it and just place a new one if worse came to worst and I needed more IVs.  So, as of January 8, 2015, I was PICC line free!  This month also was the start of my becoming extremely diligent when it came to therapy compliance.  My biggest goal in life at this point was to NOT need the hospital until after the exam (a big aspiration as I'd consistently needed IVs in February for the past three years).

 My "winter" boards and Bar Exam motivation

February - Bar Prep on steroids.  Prednisone-like spontaneous and irrational tears very much included, haha.  It was hands down the most challenging academic feat I've ever attempted, and February was about the time the once-weekly meltdowns started, where I would randomly burst into tears because it all felt like too much.  I gave myself about 60 seconds to despair each time it happened, then wiped my nose, took a *deep* breath, and started my next practice question.  Studying bumped up to a pretty steady 7 days a week, averaging about 10 hours a day of studying (less on Sundays).  It was also about this time I had to deal with some "new insurance" issues, namely being that they didn't want to cover my inhaled colistin Rx.  I may or may not have kept a running list of people I'd snapped at and needed to call and apologize to the week after the bar exam....  And yet, amazingly during this time, although I could tell my lungs were struggling and needed that colistin, my health remained remarkably stable.  The actual exam was Tues-Thur of the last week of February, just in time for our first snow/ice storm of the year!  It was crazy timing, but didn't stop the test.  I'll never forget the unexpected rush I felt as soon as "Time!" was called after the afternoon session on the last day.  Until that exact moment I'd been so focused on survival that I hadn't let the thought of being "done" set in.  At that point, it was over - I'd survived taking the test, given it all I had, and now all that was left to do was wait 2-3 months to find out if I was considered good enough to be admitted to the bar.  The waiting game began....

March - March was a pretty chill and relaxing month.  Because I'd quit my internship at Legal Aid my last semester of school to focus on health and studies, I had no job lined up directly after the bar exam, and for that I am now sooo grateful.  It was a wonderful and much-needed month to slowly unwind from the stress of test-taking and get back into the groove of being a productive member of my household.  We had a second huge snow storm come through the first week of the month, forcing the hubby and I to stay inside and just enjoy being home together (and building a snowman, of course!).  Where we live, snow never sticks around for long, so by the second week of March we were clearly entering spring.  At this point I continued fighting to get my colistin, as well as approval to start a monthly shot called Xolair, which targets allergy-induced asthma symptoms.  My mom and I also took a fun mother-daughter weekend shopping trip to a massive outlet mall town a few hours away.  Sadly, this was also the month I lost my first friend to CF.  That is a true statement two, ways - he was the first friend with CF I've had pass away, but he was also one of my very first friends, period.  Our moms met in CF clinic right after each of us were diagnosed, so James was a big part of my earliest memories.  He was a truly good man who I know is still missed by many.

April - Spring arrived in full force with record-breaking rains and weather changes.  I started working with a personal trainer twice a week to build up my endurance.  Still fighting for the colistin, I finally just had to pay out-of-pocket for the meds while the appeals process was going on (luckily colistin is an old enough drug it's not nearly as expensive as Tobi or Cayston would be - but it was still a really big chunk of change!!).  I felt an improvement in my lungs within a day or two of starting back on the colistin once it arrived.  This was also one of my favorite months of the year because this is when the hubby and I took my graduation trip to London/Paris!  This was made an even more special time because, from the bar exam up until this point, I really felt like I was constantly waiting for the other shoe to fall, for my health to take a sudden nose dive and land me in the hospital again.  I lived in a near-constant state of worry for when this was going to happen and disbelief that it hadn't already.  I became increasingly concerned as our two-week trip abroad approached, but once that colistin arrived, I started to feel more hopeful that maybe this streak of good health would continue through our trip.  And it did!  We had an amazing time - our first weekend was spent in London, where we packed in a special dinner, a street-food walking tour, an historic pub walking tour where we sampled a variety of beers and ales (seeking out and trying traditional and craft beers in different cities is one of our hobbies), an amazing church service at an  Acts 29 church plant in the city (a network of churches our own home church belongs to), a Sunday roast, and a day of exploring the more traditional tourist spots.  Then we took the eurostar to Paris where we met up with my family.  We spent several days exploring the city, and also visiting with my french family that lives in Paris and a small town a few hours south.  The trip was lovely on so many levels - and, to top it all off, while in Paris on the evening of April 30, I found out I passed the bar!!  All those years in school and all that hard work studying had paid off - I was officially an attorney!  Now I just needed to work on that tiny little detail of getting a job....



May - We got back from our trip in early May, then turned around 2 days later to head to the state capitol for my swearing-in ceremony.  This month the hubby and I celebrated our 2nd wedding anniversary, and I ushered in my 29th birthday.  This birthday was a significant improvement from last year's which was spent incredibly sick at a friend's wedding, followed by admittance to the hospital the next day for a 19-day stay.  With that in mind, this birthday was pretty special by contrast.  My parents moved out of my childhood home (and into my grandmother's old home - a weird switch, but at least they're still somewhere that feels comfortable and familiar!). This is also the month I officially started the Phase 3 trial for a the vertex 661 + kalydeco combo.  This combo is supposed to be the 2nd generation of Orkambi, which was vertex 809 + kalydeco.  May began the 6 month trial period where I was either receiving the meds or a placebo.  This was exciting because at the time Orkambi had not yet been released.  Also because they gave me a super trendy grandpa watch to wear 24/7 for 6 months.  I'll eventually write an entire post just on the trial.  This is also the month I started taking my Xolair shots AND the month my insurance finally approved my colistin!

June - Highlights for this month included three out-of-town weddings for friends and family, and an out-of-town conference with the hubby for the annual meeting of our state bar association (hubby is an attorney, too).  This is also the month I interviewed for a family law staff attorney position at Legal Aid.  This was literally my "dream job" coming out of law school - I wanted to be back at this organization, working with those colleagues and with the demographic their office served.  This interview was followed by yet another waiting game.  My health held steady.

July - The job waiting game continued.  And then came an awkward conversation with a friend from law school who, while we were trying to plan a time to meet for lunch and catch up, mentioned she was starting at Legal Aid the following week as their new family law attorney, so she'd need to see what her schedule was like.  I couldn't help but laugh (and yes, cry a little later on) - mostly, though, I was just glad to have heard something about the position being filled so I could move on.  Health was still holding strong.

August - In August, the hubs and I participated in our first ever CF fundraiser.  It was our local chapter's CF Climb, and our team raised over $5,700 for CF research!!  It was a really fun time with friends and family - and I even did the climb!  I only did the half race of 20 floors instead of the full 40, and my time was next to last, but I was still awfully proud for finishing!  And to top it all off, "I" won first place for highest individual fundraiser.  The generous outflowing of support we received from friends, family, and beyond was incredibly touching.  Also during this month, I began putting plans together with a friend to open our own private practice law firm, and I took in a few estate planning clients.


September - The law firm partnership discussions continued as I tried to re-learn my wills and estates courses and apply them to real practice.  We celebrated my husband's 32nd birthday, and welcomed the official start of fall.  And then, completely out of the blue, I got a call from Legal Aid with a job offer.  It caught me totally off guard, especially considering it had been over 3 months since my interview and all my time and focus had shifted to researching starting my own firm - but after about 3 seconds of hesitation, I knew deep down that a job with Legal Aid was right.  I tentatively accepted the offer on the spot, then took a day to seriously pray and talk about it with my husband.  And the more we prayed and talked about it, the more peace I had about accepting the position.  It was a very difficult call to my friend and would-be partner to tell him I'd received the offer and planned to take it.  It was also scary to think about how my health would respond to a full time, 40/hr week job where people would be depending on me to consistently show up with my A-game to fight for the best interest of their children in court.  But ultimately I decided to embrace this new challenge and take a leap of faith that God would not have so clearly guided me to this position only to have me fail miserably at it.  I accepted the job as a family law staff attorney and started the last week of September.  And I've honestly loved every minute of it since.

October - I continued to love my new job.  What I did not love so much, however, was all the germs I was suddenly exposed to by re-entering the workforce.  Less than a week and a half into my new job, I came down with my first cold in almost a year (ugh!).  Thankfully it was relatively mild, and with the help of some oral antibiotics and prednisone, I was able to make it through without any need for further medical intervention.  It did, however, leave me with incredibly raspy lungs at night - I was able to breathe deeply, but woke up several times throughout the night with a drowning feel because of the liquidy junk that had settled in my lungs and needed to be cleared out.  That fun lingered for at least 6 weeks.  But on a happier note, another way cool travel experience happened this month!  I went to Berlin with my husband and dad for a long weekend to attend the wedding of a dear friend (she was an exchange student who was my age and lived with my family for a year in high school).  The wedding and the bride were absolutely beautiful - what a fun memory!  It was also my first trip to Berlin and northern Germany, and the fall was the perfect time to go, I think.  The weather was cool and a little rainy, but the autumn foliage and colors were breathtaking.  We arrived in Germany on Thursday afternoon and left to come back home on Monday morning - it was a whirlwind trip, but well worth it!  Also in October was my first time to appear in court as an attorney.  Woohoo!

November - More settling in to my new job.  This is about the time I finally started feeling like a "real" attorney (well...sometimes...).  I continued needing oral antibiotics and prednisone on a pretty regular basis, but always perked up immensely once I started them.  This is the month I completed the first phase of my Vertex 661 trial and officially rolled over into the second phase where I was for-sure getting the real drug.  I saw little if any change, so I'm pretty sure I've been on the drug the whole time, but it will be awhile still before I know for sure.  Hubby got tested this month to find out if he was a CF carrier for if/when we decide to start trying for a family (finally - figuring out how to get him tested proved way more difficult than it needed to be!)  After an uncomfortably long wait, we got the results and YAAYY!! He's not a carrier!!  That was a huge relief, just so we're more informed as we move forward with these family decisions.  Thanksgiving came and then we decorated for Christmas - my fave.

December - Somewhat surprisingly, December was a rather uneventful month.  Work started getting busy as my case load increased, and there was the usual hustle and bustle around Christmas to keep us busy.  I had the chance to catch up with several friends who were back in town for the holidays, including one of my very best friends whom I hadn't seen since my wedding over two and a half years ago!!  Her and her husband live and work in New York City, so visiting takes a real effort - but we finally made it happen when they came to visit for one night on their way to visit family a few hours away, and it was awesome.  Then it was time to celebrate Christmas with our families, and then hubby and I had our own Christmas at home on New Year's Day like we do every year (whence he spoiled me, per usual :) )

I ended the year feeling a little run down, but am still doing well enough the doctors don't seem to think I need the "big guns" of IVs just yet - that means I've officially made it a full year with no IVs and over 14 months out of the hospital.  (That hasn't happened since 2011!)  We'll see what 2016 holds!  These early winter months sure are the hardest!

So, there we go - 2015 in review.  Really an all-in-all fantastic year.  I can't wait to see what new adventures (and challenges!) 2016 holds.  (Sidetone:  I turn 30 this year.  Whooooaaa.)

Happy belated new year, y'all!!