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.