Tuesday, October 22, 2013
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!
Tuesday, October 1, 2013
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.
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.
Friday, September 20, 2013
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.
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.
Sunday, September 8, 2013
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!
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!
Tuesday, August 6, 2013
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.
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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. :)
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...).
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.
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. :)
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. :)
Thursday, April 18, 2013
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.
Monday, April 15, 2013
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!
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!
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