I've tried to write up some blog posts about my usual topics (health and law school), but I honestly never get very far because my brain gets bored and tired trying to be creative and informative at the same time. Soooo, I'll just wrap those two topics up for now by saying:
1. I came down with a cold at the end of October that I knew was bad news bears from the start. It ended with me feeling bad enough a week and a half later that I called my doc and went to the hospital where they discovered I was so dehydrated that my heart rate had sky rocketed, my O2 sats had dropped, and I had fever for the first time since I-don't-know-when. They pumped me full of saline, then started some IV antibiotics, and everything had equalized within 12 hours or so, thankfully. I only had to stay in the hospital 4 days this time, which is new to me - it's usually at least 10-14 days, which is why I typically resist caving in and agreeing to be admitted. So it was nice to really only miss out on a few days of life and school. Also thankfully, this unexpected dose of antibiotics and prednisone has bumped my numbers back up to the highest they've been all year, so yay for that!
2. Law school. Almost. Done. Thank. The Lord. I have 2.5 weeks of class left, then finals, then graduation!! Oh yeah, then the bar. Boooo. That will be a super trying time for my health, sanity, and probably every single relationship in my life. I am asking for lots of prayers for good health and diligence! Luckily I have some pretty awesome cheerleaders in my corner, including a husband who has been through the stress of studying for and taking the bar and will loving keep my butt in gear while comforting me when it all feels too much. :)
Ok. Now for the real post. I've been cooking a lot recently, and wanted to share some of the better recipes on here (it seems like an easy post that won't require too much writing creativity!).
"One-Pot" meals have become one of my new obsessions. If I can keep everything contained to a cutting board and a single pot to clean, I am a happy camper and a much more enthusiastic cook!
Today I made this "One Pan Mexican Quinoa" for lunch. It. Was. Awesome. It literally took me less than 10 minutes to get everything in the pot, then I was able to hang out with hubby and enjoy a lazy morning on the couch until it was ready! Seriously worth a try if you're looking for something new, fast, healthy AND tasty.
A few days ago, our sweet, elderly, Mexican neighbors gave us a handful of homegrown peppers from their garden and WHEW are they spicy! The husband laughing told my hubby that his stomach couldn't handle them anymore, but that his wife still ate them. We gave the peppers a nibble and they kinda knocked our socks off. I've been getting gradually more adventurous for using them in my cooking this week, and today I decided to use them in the Mexican Quinoa. I used them in place of the jalenpenos and didn't bother seeding or deveining them. It definitely kicked the spice level of this dish way up there, but the result is sooooooo delicious!
Cooking tip: Where I live in the south, this is common knowledge, but in case there are readers from regions that don't use spicy peppers in half their dishes like we do, always seed and devein your peppers if you want the pepper flavor without the spice. By adjusting how much of the vein and the seeds you use in your dish, you can control how spicy it will be. Another option is to just find a pepper that is labeled "mild", such as a mild hatch chili or poblano pepper. Personally, I like starting with the spice and just toning it down until I get the ideal level of spiciness for the dish.
This dish resembles a quinoa chili with some extra mexican flavors. In the end, I added some chopped red bell pepper and green onions to add some cold and snappy textures to the dish, as well as some feta cheese crumbles. This makes it a more well-rounded meal and the cheese adds a little extra fat to make sure all the vitamins from the veggies get absorbed.
This isn't a very high-fat dish, so if you're looking to put on some weight, you might try adding a few extras. The only real fat sources is the tablespoon of olive oil and the avocado. I would suggest adding cheese for some extra calories. I also think this would be delicious mixed with some kind of meat - perhaps some ground beef or chicken sautéed in some additional olive oil.
NOTE: it took my quinoa closer to 40 minutes to cook down. If yours doesn't look done at 20 minutes, just keep an eye on it every 8-10 minutes until the germ rings start to appear and the soupiness has cooked down.
Let me know if you try it and what you think!
One-Pan Mexican Quinoa
Sunday, November 16, 2014
Thursday, September 11, 2014
Alkalol - my nose's new BFF
OBLIGATORY DISCLAIMER: I'm not a doctor. I'm just talking about what has worked for me in the blog that follows. Talking with your own doctor before trying something new is always the best way to go!
So I have a few new health discoveries I thought I'd share with the world.
But first, some non-health-slash-"normal"-people-news: ... I've officially started my last semester of school EVER!! SWEET!! I wrapped up my internship at Legal Aid at the beginning of August. It was a really hard decision to leave and not stay through this last semester, but I had a legal ethics exam to study for at the beginning of the month (which I recently found out I passed - woohoo! Some group of unknown people somewhere consider me ethical enough to practice law!) and I have 15 hours (6 classes) this semester. As much as I loved working there, I wanted to make sure my body wasn't pushed too hard for the rest of the year after what I went through back at the start of the summer with my health.
So now that we're back on the health topic - I've made a few semi-important health discoveries over the past month I wanted to share with the world.
Today's topic is....Alkalol! (when you first mention this to someone else, be prepared for them to assume you are drunkenly pronouncing "Alcohol") It's an over-the-counter nasal rinse that includes a blend of menthol and natural oils that acts as a mucus solvent, among other things. I've started adding about a tablespoon to my daily sinus rinses, and I'm pleased to say I can tell a difference!
I was getting frustrated because, despite doing nasal rinses twice a day almost religiously, and despite just having had another sinus surgery back in June, I could feel a huge chunk of hard gunk building in my left sinus. It got so distracting that I reached a point where I would *fantasize* (I'm using that term loosely here) about going to the ENT and having him reach up my nose with those long tweezer-things, and pull out that hard glob, no matter how much it hurt, because the relief would be worth it. (sorry, I know that's disgusting - but such is the world of CF!) So I started googling, desperate to find some other kind of way to break up gunk in your nose. I found the blog of one CFer who said she'd had horrible sinus problems, and her new ENT had given her a new combination therapy to try: Alkalol mixed in with her normal sinus rinse, as well as a few drops of baby shampoo, followed by a saline spray in each nostril that consisted of a bottle of saline that had two singular tablets dissolved in it. She claimed it had done wonders for her.
The baby shampoo part freaked me out a little, but apparently it's a for-real thing. (Here's a mostly-respectable-looking study done on it and published in the American Journal of Rhinology) I did some more research, and found other CF patients who had been put on this particular combination therapy (or one very similar) and been happy with the outcomes. So I decided to give it a try. I headed to my local drug store, bought some Alkalol, a travel-sized baby shampoo, and a generic saline nose spray.
The first few nights, my nose felt "refreshed" right after I'd done the rinse, but I was incredibly stuffy all night long, for several nights in a row. That's when I decided I'd tried too many new things too quickly. I'd originally mixed 1/4 cup of Alkalol with 3/4 cups of water and my normal sinus rinse packet, with a few drops of the baby shampoo. As one CF patient stated in regards to this mixture, it "burned with the fire of 10,000 suns," but the burning quickly gave way to the pleasant, refreshing openness only menthol can create. I then followed it with the singulair/saline spray. I think the mixture was just too much, too quickly, though, because my nasal passage would then be inflamed and stuffy all night long. I cut out the baby shampoo completely, as well as the saline spray, and scaled back to around a tablespoon of Alkalol mixed in with the sinus rinse.
AND IT'S WORKING! Not only is my nose no longer stuffy all night, that big chunk of gunk has started to break up and clear its way out! It took about a week of using the Alkalol mixture before I started to notice a difference, but sure enough that hard piece of gunk that had been bothering me for weeks started breaking up and clearing out. It feels so much better! Whatever combination of ingredients in the Alkalol that acts as a mucus solvent is just what I needed to add to my sinus clearing routine.
I think I'm going to eventually try to work my way up to the 1/4 cup Alkalol to 3/4 cup water ratio, and possibly add back in the baby shampoo, but for now I'm happy with my diluted product.
The only negative about Alkalol I've found is that it contains "all natural ingredients".... and caramel color. I think that is super random to include in a nasal wash. However, I personally am not particularly freaked out by the use of caramel color, especially in whatever tiny amount is added to give this rinse a super-light-brown color, but if that's the kind of thing that bothers you, just be aware it's in there.
That's all for now. I'll be back soon with one of my other new "discoveries!"
Here's a link to the Alkalol website.
So I have a few new health discoveries I thought I'd share with the world.
But first, some non-health-slash-"normal"-people-news: ... I've officially started my last semester of school EVER!! SWEET!! I wrapped up my internship at Legal Aid at the beginning of August. It was a really hard decision to leave and not stay through this last semester, but I had a legal ethics exam to study for at the beginning of the month (which I recently found out I passed - woohoo! Some group of unknown people somewhere consider me ethical enough to practice law!) and I have 15 hours (6 classes) this semester. As much as I loved working there, I wanted to make sure my body wasn't pushed too hard for the rest of the year after what I went through back at the start of the summer with my health.
So now that we're back on the health topic - I've made a few semi-important health discoveries over the past month I wanted to share with the world.
Today's topic is....Alkalol! (when you first mention this to someone else, be prepared for them to assume you are drunkenly pronouncing "Alcohol") It's an over-the-counter nasal rinse that includes a blend of menthol and natural oils that acts as a mucus solvent, among other things. I've started adding about a tablespoon to my daily sinus rinses, and I'm pleased to say I can tell a difference!
I was getting frustrated because, despite doing nasal rinses twice a day almost religiously, and despite just having had another sinus surgery back in June, I could feel a huge chunk of hard gunk building in my left sinus. It got so distracting that I reached a point where I would *fantasize* (I'm using that term loosely here) about going to the ENT and having him reach up my nose with those long tweezer-things, and pull out that hard glob, no matter how much it hurt, because the relief would be worth it. (sorry, I know that's disgusting - but such is the world of CF!) So I started googling, desperate to find some other kind of way to break up gunk in your nose. I found the blog of one CFer who said she'd had horrible sinus problems, and her new ENT had given her a new combination therapy to try: Alkalol mixed in with her normal sinus rinse, as well as a few drops of baby shampoo, followed by a saline spray in each nostril that consisted of a bottle of saline that had two singular tablets dissolved in it. She claimed it had done wonders for her.
The baby shampoo part freaked me out a little, but apparently it's a for-real thing. (Here's a mostly-respectable-looking study done on it and published in the American Journal of Rhinology) I did some more research, and found other CF patients who had been put on this particular combination therapy (or one very similar) and been happy with the outcomes. So I decided to give it a try. I headed to my local drug store, bought some Alkalol, a travel-sized baby shampoo, and a generic saline nose spray.
The first few nights, my nose felt "refreshed" right after I'd done the rinse, but I was incredibly stuffy all night long, for several nights in a row. That's when I decided I'd tried too many new things too quickly. I'd originally mixed 1/4 cup of Alkalol with 3/4 cups of water and my normal sinus rinse packet, with a few drops of the baby shampoo. As one CF patient stated in regards to this mixture, it "burned with the fire of 10,000 suns," but the burning quickly gave way to the pleasant, refreshing openness only menthol can create. I then followed it with the singulair/saline spray. I think the mixture was just too much, too quickly, though, because my nasal passage would then be inflamed and stuffy all night long. I cut out the baby shampoo completely, as well as the saline spray, and scaled back to around a tablespoon of Alkalol mixed in with the sinus rinse.
AND IT'S WORKING! Not only is my nose no longer stuffy all night, that big chunk of gunk has started to break up and clear its way out! It took about a week of using the Alkalol mixture before I started to notice a difference, but sure enough that hard piece of gunk that had been bothering me for weeks started breaking up and clearing out. It feels so much better! Whatever combination of ingredients in the Alkalol that acts as a mucus solvent is just what I needed to add to my sinus clearing routine.
I think I'm going to eventually try to work my way up to the 1/4 cup Alkalol to 3/4 cup water ratio, and possibly add back in the baby shampoo, but for now I'm happy with my diluted product.
The only negative about Alkalol I've found is that it contains "all natural ingredients".... and caramel color. I think that is super random to include in a nasal wash. However, I personally am not particularly freaked out by the use of caramel color, especially in whatever tiny amount is added to give this rinse a super-light-brown color, but if that's the kind of thing that bothers you, just be aware it's in there.
That's all for now. I'll be back soon with one of my other new "discoveries!"
Here's a link to the Alkalol website.
Monday, June 30, 2014
Wanderluster
I'm a wanderluster. Always have been, always will be. I love everything about traveling.
I love packing for a trip, and the anticipation that goes with thinking about where you'll be soon and what you might need there.
I love driving around the airport (this part blows my husband's mind - I know a lot of people get stressed when driving around an airport, but I enjoy the excitement buzzing all around me - plus it's fun to think about all the exciting places those planes could take me!).
I love being in the airport - checking my bags, successfully making it through security with all my medicines and nebulizer, buying something to munch on, and then anxiously waiting at the gate.
I love being on an airplane (though, admittedly, this part can get old around hour 5 or 6) - there's this moment when I sit down in my seat and buckle my seatbelt that I smile and think "Yes. I am in my element."
I love retrieving my bags from the carousel, then stepping outside in a new location for the first time and breathing in its fresh air.
I love staying somewhere that's not "home," be it a hotel, rented apartment, friend's house, etc. I love having a new space to claim and make "mine" for a brief amount of time.
I love learning the transportation routes of new places, be it navigating a city subway or driving through curvy mountain roads.
I love getting to know new places - everywhere you go, even if its within your own country or even state, there is a unique vibe and culture that is different from your own hometown. My favorite trip is one that's a perfect blend of "seeing the sites" and finding some local culture to blend with. I view seeing the historical sites as getting to know the city as it once was, and hanging out with the locals in their vie quotidienne as getting to know the city as it is now - both are equally awesome and important!
If any or all of the above resonates with you, my guess is that you're probably a wanderluster, too. Welcome, friend! Let's talk a little more, then, about one of my (our?) favorite conversation topics, then: traveling!
I've had a good deal of opportunities to travel in my life, for which I am exceedingly grateful. Early on, my parents didn't hesitate to send me to visit relatives during the summer by myself, which I think really contributed to my comfort with traveling. In fact, my first flight by myself to go visit family happened just a few weeks after I turned 6! I remember being chatty with the flight attendants and telling them about my Barbies, and laughing when we landed because the plane bumped up and down - obviously I wasn't too disturbed about traveling alone. My dad also traveled a great deal with his work when I was growing up, so my mom and I often accompanied him (which worked out for us! It meant free hotel rooms and some free meals, which can be a bulk of the expense of a trip!). We traveled both domestically and abroad in Europe, and somewhere in that process I fell in love with travel. I couldn't get enough of it, and still can't.
My most recent adventures took me and my husband on a trip to Europe with my parents. We stayed in an apartment in Rome for 8 days, and a hotel in London for 3 days. This was my first time to Italy, and I was super excited to go! I'd been to London several times before, but my husband had never been, so I had a list of places to show him during our short time there.
Rome was amazing! I took a Roman History course way back in the day during my freshman year of college, and a Latin course even further back in the day during my freshman year of high school. Needless to say, my history was a lllliiiiiitttle rusty, but taking those courses was enough to instill in me a true interest in ancient Rome, so I LOVED seeing all the ancient ruins, just scattered randomly throughout the city. Then you have the entire history of the Catholic church layered on top of the ancient Roman history, plus the Italian renaissance - the place is positively seething with history, and secrets, and absolutely amazing architecture...and also pasta and pizza! Love, love, LOVE it!
I love packing for a trip, and the anticipation that goes with thinking about where you'll be soon and what you might need there.
I love driving around the airport (this part blows my husband's mind - I know a lot of people get stressed when driving around an airport, but I enjoy the excitement buzzing all around me - plus it's fun to think about all the exciting places those planes could take me!).
I love being in the airport - checking my bags, successfully making it through security with all my medicines and nebulizer, buying something to munch on, and then anxiously waiting at the gate.
I love being on an airplane (though, admittedly, this part can get old around hour 5 or 6) - there's this moment when I sit down in my seat and buckle my seatbelt that I smile and think "Yes. I am in my element."
I love retrieving my bags from the carousel, then stepping outside in a new location for the first time and breathing in its fresh air.
I love staying somewhere that's not "home," be it a hotel, rented apartment, friend's house, etc. I love having a new space to claim and make "mine" for a brief amount of time.
I love learning the transportation routes of new places, be it navigating a city subway or driving through curvy mountain roads.
I love getting to know new places - everywhere you go, even if its within your own country or even state, there is a unique vibe and culture that is different from your own hometown. My favorite trip is one that's a perfect blend of "seeing the sites" and finding some local culture to blend with. I view seeing the historical sites as getting to know the city as it once was, and hanging out with the locals in their vie quotidienne as getting to know the city as it is now - both are equally awesome and important!
If any or all of the above resonates with you, my guess is that you're probably a wanderluster, too. Welcome, friend! Let's talk a little more, then, about one of my (our?) favorite conversation topics, then: traveling!
I've had a good deal of opportunities to travel in my life, for which I am exceedingly grateful. Early on, my parents didn't hesitate to send me to visit relatives during the summer by myself, which I think really contributed to my comfort with traveling. In fact, my first flight by myself to go visit family happened just a few weeks after I turned 6! I remember being chatty with the flight attendants and telling them about my Barbies, and laughing when we landed because the plane bumped up and down - obviously I wasn't too disturbed about traveling alone. My dad also traveled a great deal with his work when I was growing up, so my mom and I often accompanied him (which worked out for us! It meant free hotel rooms and some free meals, which can be a bulk of the expense of a trip!). We traveled both domestically and abroad in Europe, and somewhere in that process I fell in love with travel. I couldn't get enough of it, and still can't.
My most recent adventures took me and my husband on a trip to Europe with my parents. We stayed in an apartment in Rome for 8 days, and a hotel in London for 3 days. This was my first time to Italy, and I was super excited to go! I'd been to London several times before, but my husband had never been, so I had a list of places to show him during our short time there.
Rome was amazing! I took a Roman History course way back in the day during my freshman year of college, and a Latin course even further back in the day during my freshman year of high school. Needless to say, my history was a lllliiiiiitttle rusty, but taking those courses was enough to instill in me a true interest in ancient Rome, so I LOVED seeing all the ancient ruins, just scattered randomly throughout the city. Then you have the entire history of the Catholic church layered on top of the ancient Roman history, plus the Italian renaissance - the place is positively seething with history, and secrets, and absolutely amazing architecture...and also pasta and pizza! Love, love, LOVE it!
Colosseum:
Ancient Roman Forum:
More of the Forum:
State Monument of Sorts:
PIZZA!! It was everywhere!! Seriously, it was almost cliche - we were hard-pressed to find any restaurants serving food other than pizza, pasta, or sandwiches in the entire city...
Vatican City and St. Peter's:
Trevi Fountain:
Pantheon:
Ruins at Pompeii - seriously amazing! That floor is 2,000 years old!!
Pretty Ceilings in the Vatican
View of Rome from an elevated park near the Borghese Galleries:
Political Rally in Piazza del Popolo:
Aaaaaand, then we got to London, which apparently was an epic fail on my part in terms of taking pictures. Boo! But the city was amazing, as always. Unfortunately, on the flight from Rome to London I must have picked up some kind of germs, because our few days in England marked the start of my really not feeling well (which led to my subsequent hospital admission upon our arrival back home a few days later). This really stunk because I had so many places I wanted to go and show my husband.....but at least we got to check out a few highlights. (And I'm hoping it just whet his appetite to go back sometime soon ;) ).
Our 1 year wedding anniversary actually happened while we were in London, so I was in charge of planning something fun for us to do to celebrate. The highlight was our "champagne tour" in the London Eye - we did a round in the huge ferris wheel by the Thames and were given glasses of champagne to enjoy during our ride. It was really cool!
View from our London Eye capsule
The next day the family rented a car and my dad drove us around the lovely English countryside. We drove from London to Oxford, attempted to see Highclere Castle (aka Downton Abbey - but the grounds closed literally 10 minutes before we got there :( ), then out to Stonehenge. (P.S. Between being stationed in England for a few years during his military days and his lifetime work travels, my dad handles british cars and driving on the "wrong" side of the road like a champ - I'm always so impressed how easy it is for him!) It was cold and rainy that day (surprise, surprise), but I just accepted it as feeling super "Britishy" and loved it all the same. :)
Stonehenge (from the car window)
Friday, June 27, 2014
Today
I mowed my lawn today. With a push reel mower.
This makes me happy. This makes me proud.
Because this was my first try since my initial failed attempt at lawn mowing when I was 15. Because we own a house. And because I'm finally feeling well enough to accomplish such things.
That is all.
This makes me happy. This makes me proud.
Because this was my first try since my initial failed attempt at lawn mowing when I was 15. Because we own a house. And because I'm finally feeling well enough to accomplish such things.
That is all.
Friday, June 13, 2014
Big Hospital No-No
So a lot of really awesome things have happened since my last blog update - liiiiike, moving into our first house, surviving another round of finals (and coming out with my best semester GPA yet - woohoo! Too bad it takes the full three years of law school to really get your exam routine down...oh well!), and an amazing trip with my hubby and parents to Rome and London. I'll have a new post soon talking about my trip. But for now I'm sad to say I'm back in the hospital, and have a short blog to post about that. (Boooo)
Based on other people's hospital stories, mixed with and my own experiences, I've come to a conclusion: It's tough for people with a chronic illness to be in the hospital because, oftentimes, we know more about our care and what we need than our nurses and other hospital care-givers know. This is simply because we're used to dealing with these issues on our own, every day, and we therefore know when something isn't being done correctly. (Contrast this with a person who's been admitted for an accident or acute illness - they probably have no idea what kind of care they should be receiving, because this is all new to them anyway!) This puts us in an awkward position of having to find a balance between making sure things get done right and not being a Miss Bossypants patient. I am not someone who typically does well with confrontation (kind of ironic since I'm studying to be a lawyer, huh?), but after a few days/weeks in the hospital, I sometimes become irritable enough that I have the courage to speak up when something isn't being done "correctly."
Which leads me to today's story and the reason for this post. So I'm in the hospital, and for the most part everyone has been great. The guy who inserted my PICC was a little rough (and he put in the wrong kind, grrrr), and occasionally the nurses get on my nerves by waiting too long to start a treatment/IV, being WAAAAY too cheerful or talkative when they come into my room and wake me up at 7am, etc., but for the most part things have been fine. Strangely, though, it's not the people constantly injecting things into my veins that have me worried - it's the people handling my breathing treatments. Most of the RTs here have been wonderful, but every once in a while they do something that makes me cringe or want to yell "no nO No NO NOO!!"
(REAL STORY starts here --> ) Case-in-point: today, a friendly lady was assigned as my RT. Things were fine until I sat there and watched her take my nebulizer into the bathroom and rinse it out with tap water from the sink. In my bathroom. In the HOSPITAL. I couldn't believe I'd just seen that happen, and was too much of a wuss to say anything right then. After she'd left, I tossed the nebulizer in the trash, and asked my nurse to let the RT know I'd be needing another nebulizer for my next treatment.
So she came for my next treatment and brought the new nebulizer, as requested. She asked if I'd thrown the other nebulizer away, and I said "yes," and then explained to her that using tap water from the bathroom sink to rinse nebulizers was dangerous for CF patients (actually for all patients, but I narrowed it down in this instance) because there could be bacteria in the water and on the faucet that would be REALLLY harmful to get into our lungs. She responded by saying the nurse had told her it had fallen on the floor - was that not true? She seemed hung up on the fact that what the nurse had said was not true and not really bothered by what I had said about the water.
All the same, at the end of the treatment, she grabbed the bottle of sterilized water they're supposed to use for rinsing and walked into the bathroom to rinse the neb. Most RTs just pour a little into the neb, slosh it around, and pour it into the trash bag that's in the middle of the room - neither of these are awesome options, but I definitely feel a lot more comfortable doing it over the trashcan full of nothing but plastic gloves and gowns than doing it in the bathroom! However, I was prepared to let this one go. But then...
She took apart the neb, placed both pieces IN the sink, then poured the sterilized water over them while they were in the sink!! AGH!!! It was a total #facepalm moment. I get freaked out if I drop a neb piece into my sink while rinsing it at home, even knowing I've wiped down the sink with Clorox wipes beforehand and I'm about to sterilize the neb anyway. Can you imagine what all could be growing around the sink in a tiny bathroom in the hospital?? Aside from the fact that it's 12 inches from the toilet, that's the place where people have been washing their hands after using the bathroom, where I've been doing sinus rinses (and had a lot of gross plugs come out in the process), etc. - also, I've been here almost two weeks and can personally vouch that no one from housekeeping has touched that sink with a cleanser since I've been here. ICK!!
At that point I kinda felt like no matter what I said, it just wasn't going to sink in with her that bathroom sinks are dangerous for breathing treatment components, so once she left, I once again threw away the nebulizer cup, and will be bringing up the issue with the night RT.
I feel really bad "tattling" on her, but I feel like her supervisor really needs to know so that she can be educated on the proper way to do this part of the job, along with the hazards of not doing it correctly. Sidenote: I had this RT during a hospital stay in late 2011, and the same thing happened, only I couldn't see it happening directly because the bathroom was around a corner. I mentioned it to her and to another RT then, but apparently not much has changed in the last 2.5 years!
Ok, thats all. Just thought I'd share my story. If anyone has any insights for how to deal with issues like this, I'd greatly appreciate it!
Based on other people's hospital stories, mixed with and my own experiences, I've come to a conclusion: It's tough for people with a chronic illness to be in the hospital because, oftentimes, we know more about our care and what we need than our nurses and other hospital care-givers know. This is simply because we're used to dealing with these issues on our own, every day, and we therefore know when something isn't being done correctly. (Contrast this with a person who's been admitted for an accident or acute illness - they probably have no idea what kind of care they should be receiving, because this is all new to them anyway!) This puts us in an awkward position of having to find a balance between making sure things get done right and not being a Miss Bossypants patient. I am not someone who typically does well with confrontation (kind of ironic since I'm studying to be a lawyer, huh?), but after a few days/weeks in the hospital, I sometimes become irritable enough that I have the courage to speak up when something isn't being done "correctly."
Which leads me to today's story and the reason for this post. So I'm in the hospital, and for the most part everyone has been great. The guy who inserted my PICC was a little rough (and he put in the wrong kind, grrrr), and occasionally the nurses get on my nerves by waiting too long to start a treatment/IV, being WAAAAY too cheerful or talkative when they come into my room and wake me up at 7am, etc., but for the most part things have been fine. Strangely, though, it's not the people constantly injecting things into my veins that have me worried - it's the people handling my breathing treatments. Most of the RTs here have been wonderful, but every once in a while they do something that makes me cringe or want to yell "no nO No NO NOO!!"
(REAL STORY starts here --> ) Case-in-point: today, a friendly lady was assigned as my RT. Things were fine until I sat there and watched her take my nebulizer into the bathroom and rinse it out with tap water from the sink. In my bathroom. In the HOSPITAL. I couldn't believe I'd just seen that happen, and was too much of a wuss to say anything right then. After she'd left, I tossed the nebulizer in the trash, and asked my nurse to let the RT know I'd be needing another nebulizer for my next treatment.
So she came for my next treatment and brought the new nebulizer, as requested. She asked if I'd thrown the other nebulizer away, and I said "yes," and then explained to her that using tap water from the bathroom sink to rinse nebulizers was dangerous for CF patients (actually for all patients, but I narrowed it down in this instance) because there could be bacteria in the water and on the faucet that would be REALLLY harmful to get into our lungs. She responded by saying the nurse had told her it had fallen on the floor - was that not true? She seemed hung up on the fact that what the nurse had said was not true and not really bothered by what I had said about the water.
All the same, at the end of the treatment, she grabbed the bottle of sterilized water they're supposed to use for rinsing and walked into the bathroom to rinse the neb. Most RTs just pour a little into the neb, slosh it around, and pour it into the trash bag that's in the middle of the room - neither of these are awesome options, but I definitely feel a lot more comfortable doing it over the trashcan full of nothing but plastic gloves and gowns than doing it in the bathroom! However, I was prepared to let this one go. But then...
She took apart the neb, placed both pieces IN the sink, then poured the sterilized water over them while they were in the sink!! AGH!!! It was a total #facepalm moment. I get freaked out if I drop a neb piece into my sink while rinsing it at home, even knowing I've wiped down the sink with Clorox wipes beforehand and I'm about to sterilize the neb anyway. Can you imagine what all could be growing around the sink in a tiny bathroom in the hospital?? Aside from the fact that it's 12 inches from the toilet, that's the place where people have been washing their hands after using the bathroom, where I've been doing sinus rinses (and had a lot of gross plugs come out in the process), etc. - also, I've been here almost two weeks and can personally vouch that no one from housekeeping has touched that sink with a cleanser since I've been here. ICK!!
At that point I kinda felt like no matter what I said, it just wasn't going to sink in with her that bathroom sinks are dangerous for breathing treatment components, so once she left, I once again threw away the nebulizer cup, and will be bringing up the issue with the night RT.
I feel really bad "tattling" on her, but I feel like her supervisor really needs to know so that she can be educated on the proper way to do this part of the job, along with the hazards of not doing it correctly. Sidenote: I had this RT during a hospital stay in late 2011, and the same thing happened, only I couldn't see it happening directly because the bathroom was around a corner. I mentioned it to her and to another RT then, but apparently not much has changed in the last 2.5 years!
Ok, thats all. Just thought I'd share my story. If anyone has any insights for how to deal with issues like this, I'd greatly appreciate it!
Friday, May 2, 2014
Chronic Illness Survey
Hey peeps! So one of my friends/fellow CF patient is doing a research study for her doctorate studies (woohoo!! that's a LOT of hard work!!). To make what I'm sure is a very complicated but interesting study description short and sweet, her research is on empathy felt by family members of people with a chronic illness, and how it impacts relationships, among other things.
So guess what?? That means us! If you could take a few minutes to either send this survey to one family member (or several) who lives with you OR fill out this survey yourself if you yourself are the family member living with a child/parent/spouse/significant other, that would be amazing.
Moreover, participating in this survey would really enrich the studies being done by this wonderful, brave young lady (with CF, remember!) on the psychological aspects of chronic illness, which we ALL have had to deal with at some point with this disease!
So please, take a moment to participate if you can. Thanks so much, and Happy CF Awareness Month!
https://www.surveymonkey.com/s/C5CNWNF
So guess what?? That means us! If you could take a few minutes to either send this survey to one family member (or several) who lives with you OR fill out this survey yourself if you yourself are the family member living with a child/parent/spouse/significant other, that would be amazing.
Moreover, participating in this survey would really enrich the studies being done by this wonderful, brave young lady (with CF, remember!) on the psychological aspects of chronic illness, which we ALL have had to deal with at some point with this disease!
So please, take a moment to participate if you can. Thanks so much, and Happy CF Awareness Month!
https://www.surveymonkey.com/s/C5CNWNF
Friday, April 4, 2014
Generic Update (Brand Name Not Medically Necessary)
I have started drafting so many different posts with so many different themes over the past month - really, you would laugh to see how many awesome title's I've created that have nothing but blaring, blank, empty screen space behind them.
And so, seeing as I can't seem to commit the time to writing enough on any one of those topics to do them justice, I figured a general, bland update would be the best course of action for now. :) Sorry I don't have something more profound to offer at the moment...
First things first - I've been out of the hospital for about a month and half now. The stay ended up being a lot longer than I anticipated (though that's mostly my bad...when has a hospital stay ever ACTUALLY only been those "4 or 5 days" the doctor promised you when you agreed to be admitted?) and I was there a full two weeks. That meant missing several classes, but thankfully toward the end I was able to conspire with my RTs and nurses and plan my daily schedule around some "long walks" I wanted to take at certain times of the day (aka sneak out of the hospital and go to class, then come right back to my hospital room, haha). One reason law school is tough is because the American Bar Association will only let you miss up to 25% of classes each semester, or you don't get credit for your course. So when it became clear my "5-day weekend" stay was going to stretch into something more like 12 to 14 days, I made it clear I wasn't going to accept missing all those classes. I'm grateful my doctors, nurses, and RTs were willing to work with me to "turn a blind eye" when I needed to sneak out for a little while. Thankfully my school was only like a 5 minute drive down the road, so I was never missing more than 1hr. 45min. at a time. I guess this is a great place to also mention how grateful I am that my hubby and my mom were willing to participate in this temporary escape plan and act as my getaway/delivery car drivers. ;)
The hospital wasn't awful but it definitely wasn't fun. It turns out my pseudomonas has decided to procreate and produce a few new strands over the past few months, two of which were resistant to two separate panels of antibiotics. I'm not gonna lie, that news really freaked me out, and unfortunately my doctor was out of town the first 10 days I was in the hospital, so I felt pretty lost. The other doctors that stopped in wouldn't really commit to telling me much information, which made me feel pretty scared and desperate. Eventually an ID (infectious disease) doctor came to see me and started me on IV Colistin, as well as inhaled Colistin. That was a whole other traumatic story, but I'll save it for another time. (woohoo! don't get too excited now, you know my blog updates are sporadic at best...) Bottomline, something started helping me get better, though my PFTs never skyrocketed into the range I wanted them to end up in after two weeks of IV antibiotics. This recovery has definitely been a slow climb, but as long as those PFT numbers keep going up every time I go in to blow, I'm satisfied, even if it's only 1 or 2 points at a time!
So, now that I've been home for about a month and a half, I am like a new person when it comes to therapy compliance. This last hospital stay/exacerbation really freaked me out, and I am determined to FIGHT with all I have to get all those PFT numbers back! I have been extremely compliant with ALL of my therapies (there are the occasional slip ups, due to a late start in the morning, a day too busy to come home and do an afternoon albuterol treatment, or falling asleep as I do my treatments at night...but for the most part I've been nailing it). I've also started exercising. It's been a slow beginning, but I'm trying so very hard to build up my strength...and it's working! My new routine is to get up with my husband about 5:00 am on M/W, get all my treatments done, walk/run on the treadmill for 20 minutes, come back to shower and eat, then be at work by 8/8:30. On T/Th, I've started boxing classes - they are so much fun!! I'm definitely the scrawny little girl in the back, trying to keep up with everyone, but all the trainers are very encouraging, and while they push me to try hard, they know to back off when I hit a point I need a "breather" (which, let's be honest, is about 4x as often as the rest of the people in our class!). I really love it, and I feel so much better than I did two months ago. It's encouraging to feel my body getting stronger even after I leave the hospital and stop the antibiotics. I hope and pray this keeps up for a long while!
Other than health stuff, life has been super busy for us - I'm wrapping up my next-to-last semester of school EVER, working 16 hours a week at Legal Aid (where I've been able to prep and participate in several trials and hearings recently - so much fun! and so much work...), and, most exciting of all......
WE'RE BUYING A HOUSE!! Yep, our very first house. Neither hubby nor I have been a homeowner before, so this has been an extremely steep learning curve, but we are set to close on April 15, then move in on the 18th. We are exhausted, but just pleased as punch about our cozy new digs in an historic neighborhood just south of downtown. :) It's a really old home, built in 1921, but the inside has been completely redone, which means it should be safe for my sensitive little lungs (no excessive dust, mildew, or mold for me, thanks!). It's little, about 1400 square feet with only one bathroom, but it is just so perfect for us; plus it has been a ridiculously cool experience how God has led us through this home buying process to this particular community and house. Hopefully I'll get around to writing that story in a future blog, too. ;)
So, here it is - yes, we have a front porch, and yes, that is a chandelier hanging from it, haha. It's the little quirks like that that made me fall in love with it so quickly.
Ok, I think that's all the big updates for now. Thanks for reading, and I'll try to have some more updates/musings posted soon!
And so, seeing as I can't seem to commit the time to writing enough on any one of those topics to do them justice, I figured a general, bland update would be the best course of action for now. :) Sorry I don't have something more profound to offer at the moment...
First things first - I've been out of the hospital for about a month and half now. The stay ended up being a lot longer than I anticipated (though that's mostly my bad...when has a hospital stay ever ACTUALLY only been those "4 or 5 days" the doctor promised you when you agreed to be admitted?) and I was there a full two weeks. That meant missing several classes, but thankfully toward the end I was able to conspire with my RTs and nurses and plan my daily schedule around some "long walks" I wanted to take at certain times of the day (aka sneak out of the hospital and go to class, then come right back to my hospital room, haha). One reason law school is tough is because the American Bar Association will only let you miss up to 25% of classes each semester, or you don't get credit for your course. So when it became clear my "5-day weekend" stay was going to stretch into something more like 12 to 14 days, I made it clear I wasn't going to accept missing all those classes. I'm grateful my doctors, nurses, and RTs were willing to work with me to "turn a blind eye" when I needed to sneak out for a little while. Thankfully my school was only like a 5 minute drive down the road, so I was never missing more than 1hr. 45min. at a time. I guess this is a great place to also mention how grateful I am that my hubby and my mom were willing to participate in this temporary escape plan and act as my getaway/delivery car drivers. ;)
The hospital wasn't awful but it definitely wasn't fun. It turns out my pseudomonas has decided to procreate and produce a few new strands over the past few months, two of which were resistant to two separate panels of antibiotics. I'm not gonna lie, that news really freaked me out, and unfortunately my doctor was out of town the first 10 days I was in the hospital, so I felt pretty lost. The other doctors that stopped in wouldn't really commit to telling me much information, which made me feel pretty scared and desperate. Eventually an ID (infectious disease) doctor came to see me and started me on IV Colistin, as well as inhaled Colistin. That was a whole other traumatic story, but I'll save it for another time. (woohoo! don't get too excited now, you know my blog updates are sporadic at best...) Bottomline, something started helping me get better, though my PFTs never skyrocketed into the range I wanted them to end up in after two weeks of IV antibiotics. This recovery has definitely been a slow climb, but as long as those PFT numbers keep going up every time I go in to blow, I'm satisfied, even if it's only 1 or 2 points at a time!
So, now that I've been home for about a month and a half, I am like a new person when it comes to therapy compliance. This last hospital stay/exacerbation really freaked me out, and I am determined to FIGHT with all I have to get all those PFT numbers back! I have been extremely compliant with ALL of my therapies (there are the occasional slip ups, due to a late start in the morning, a day too busy to come home and do an afternoon albuterol treatment, or falling asleep as I do my treatments at night...but for the most part I've been nailing it). I've also started exercising. It's been a slow beginning, but I'm trying so very hard to build up my strength...and it's working! My new routine is to get up with my husband about 5:00 am on M/W, get all my treatments done, walk/run on the treadmill for 20 minutes, come back to shower and eat, then be at work by 8/8:30. On T/Th, I've started boxing classes - they are so much fun!! I'm definitely the scrawny little girl in the back, trying to keep up with everyone, but all the trainers are very encouraging, and while they push me to try hard, they know to back off when I hit a point I need a "breather" (which, let's be honest, is about 4x as often as the rest of the people in our class!). I really love it, and I feel so much better than I did two months ago. It's encouraging to feel my body getting stronger even after I leave the hospital and stop the antibiotics. I hope and pray this keeps up for a long while!
Other than health stuff, life has been super busy for us - I'm wrapping up my next-to-last semester of school EVER, working 16 hours a week at Legal Aid (where I've been able to prep and participate in several trials and hearings recently - so much fun! and so much work...), and, most exciting of all......
WE'RE BUYING A HOUSE!! Yep, our very first house. Neither hubby nor I have been a homeowner before, so this has been an extremely steep learning curve, but we are set to close on April 15, then move in on the 18th. We are exhausted, but just pleased as punch about our cozy new digs in an historic neighborhood just south of downtown. :) It's a really old home, built in 1921, but the inside has been completely redone, which means it should be safe for my sensitive little lungs (no excessive dust, mildew, or mold for me, thanks!). It's little, about 1400 square feet with only one bathroom, but it is just so perfect for us; plus it has been a ridiculously cool experience how God has led us through this home buying process to this particular community and house. Hopefully I'll get around to writing that story in a future blog, too. ;)
So, here it is - yes, we have a front porch, and yes, that is a chandelier hanging from it, haha. It's the little quirks like that that made me fall in love with it so quickly.
Ok, I think that's all the big updates for now. Thanks for reading, and I'll try to have some more updates/musings posted soon!
Wednesday, February 12, 2014
Time for a Hard Restart
Over the past few months, I've brought up to my husband several times how I wish I had a restart button. Not for life in general - I absolutely love my life, in fact - but just for my body and my health. I wish there was a hard reset button I could push, let my body "shut down" and then reboot at baseline. I wouldn't expect perfect health after the reboot - no perfectly sculpted abs or 100% lung function. I would just like to find myself at baseline, with the lung function I had a year and a half ago, no active infections, all the built-up mucus cleared out, and able to exercise without it seeming futile and like I was fighting a losing battle. CF wouldn't be gone, but through the process of just "rebooting" I could start over again with a clean slate.
It's a nice thought, this idea of a bodily restart button. And I wouldn't be unreasonable in my request - I think it would be completely understandable if we only got a certain number of "hard resets" to use during our lifetime. I could always have it as an option, but would have to be wise in deciding when to use it. (that seems like a reasonable deal, right?)
But, alas, as much as I could hope and pray and wish and beg for it, no such button exists. I'm coming to except that the closest thing to a "reset" button in my life is a hospital admission where I hit my body and my lungs with everything medicine and rest and prayer can do for it. And that's where I find myself today.
This is only my 3rd hospital stay since I was diagnosed at age 2, which, considering I'm now pushing 28 (?!) is not a bad run. I've more or less conquered my fear of hospital admissions that plagued me the better part of the past 25 years (more on that history later), but when it comes down to it, making the call to go into the hospital is still an incredibly difficult one.
I've known for about a year now that my lung function, though not awful, could definitely be better, but I just couldn't quite get where I wanted to be, even after two rounds of home IVs and two sinus surgeries. As I saw and felt yet another downward trend in my lungs over the past few months, I knew a hospital stay was probably looming in the not-so-distant future. As I mentioned, the concept of going into the hospital no longer terrifies me and I can think about it as a practical matter. When it comes right down to it, though, once I'm actually faced with packing for a stay, telling my doctor "yes, admit me," and settling into my hospital room, I'm still hit with a bit of an emotional shock.
Besides the general fear of "will this work? will I get better this time?" that lingers in the back of my mind, there are lots of other little things that can unexpectedly disrupt my emotional balance. For instance, this hospital stay marks the first time husband and I have been apart at night since we got married. It's a little thing, but it's hard not be resentful that this stupid disease forced us into that "first." Closely behind that resentment follows feelings of guilt that I'm putting us through this, and that I didn't try harder to stay on top of my treatments and out of the hospital. Then there comes the second wave of resentment that this guilt and these issues have to be a part of our lives at all, and the pity party cycle goes on and on. But (as with many aspects of chronic illness, I think) after a night of crying myself to sleep I woke up "over it" and a little stronger for the experience.
I've been in the hospital for a week now, but hope to be headed home today or tomorrow. There was talk about another sinus surgery while I'm here, but I talked to the ENT today and he said he wouldn't go in for surgery again just yet. He said my sinuses are still "relatively" clear, and that we should just try to fight the infection that's there with antibiotics, and if things don't get better, then maybe surgery. This is not my favorite answer, but I guess it's what happens when you agree to go to the hospital before things get really rough with your health. While I'm here, I'd like to hit everything with guns blazing, including getting my sinuses completely cleaned out - but, when some health issues are just so/so, I find the doctors reluctant to commit to hardcore therapy. I hope this doesn't mean I'll just land back in the hospital three or four months from now with more infection because my lungs got cleared up but not my sinuses.
But enough with the negatives and on to happier thoughts! I love how the Lord also uses these times I spend in the hospital to encourage me and pull my heart toward Him. I enjoy talking with all the nurses, and PTs, and RTs about life, law school, families, the Olympics, whatever (though, admittedly, it sometimes feels a little awkward when the nurse or RT is in the room for treatments and I feel obligated to turn on the TV or something for some noise when I'd really rather just sit and read or work!). It delights me when conversation naturally flows into a discussion about faith. It's also been a neat time for me and husband to be loved on by our home group from church. Being in the hospital also presents PLENTY of time to just sit, read the Scriptures, study, and pray. Most importantly though, I think, is the renewed sense of dependence I have on Him - in this crazy life there is so much out of my control, and I honestly don't always do so great managing those few things that ARE in my control (ahem, exercising and therapies…). But I can sit firm in the knowledge that He loves me, He seeks my heart, He teaches me, and He provides for me, no matter how many times I screw this up. Time and time and time and time again He has shown this. What I cannot control, He holds in His hands; what I can control (exercising, therapies, etc.), He can give me the strength to pursue and persevere. And ultimately, all this is part of His grand design to work all things to His glory.
So, there's my update for now. Hopefully by the next blog I'll be back in the swing of things!
It's a nice thought, this idea of a bodily restart button. And I wouldn't be unreasonable in my request - I think it would be completely understandable if we only got a certain number of "hard resets" to use during our lifetime. I could always have it as an option, but would have to be wise in deciding when to use it. (that seems like a reasonable deal, right?)
But, alas, as much as I could hope and pray and wish and beg for it, no such button exists. I'm coming to except that the closest thing to a "reset" button in my life is a hospital admission where I hit my body and my lungs with everything medicine and rest and prayer can do for it. And that's where I find myself today.
This is only my 3rd hospital stay since I was diagnosed at age 2, which, considering I'm now pushing 28 (?!) is not a bad run. I've more or less conquered my fear of hospital admissions that plagued me the better part of the past 25 years (more on that history later), but when it comes down to it, making the call to go into the hospital is still an incredibly difficult one.
I've known for about a year now that my lung function, though not awful, could definitely be better, but I just couldn't quite get where I wanted to be, even after two rounds of home IVs and two sinus surgeries. As I saw and felt yet another downward trend in my lungs over the past few months, I knew a hospital stay was probably looming in the not-so-distant future. As I mentioned, the concept of going into the hospital no longer terrifies me and I can think about it as a practical matter. When it comes right down to it, though, once I'm actually faced with packing for a stay, telling my doctor "yes, admit me," and settling into my hospital room, I'm still hit with a bit of an emotional shock.
Besides the general fear of "will this work? will I get better this time?" that lingers in the back of my mind, there are lots of other little things that can unexpectedly disrupt my emotional balance. For instance, this hospital stay marks the first time husband and I have been apart at night since we got married. It's a little thing, but it's hard not be resentful that this stupid disease forced us into that "first." Closely behind that resentment follows feelings of guilt that I'm putting us through this, and that I didn't try harder to stay on top of my treatments and out of the hospital. Then there comes the second wave of resentment that this guilt and these issues have to be a part of our lives at all, and the pity party cycle goes on and on. But (as with many aspects of chronic illness, I think) after a night of crying myself to sleep I woke up "over it" and a little stronger for the experience.
I've been in the hospital for a week now, but hope to be headed home today or tomorrow. There was talk about another sinus surgery while I'm here, but I talked to the ENT today and he said he wouldn't go in for surgery again just yet. He said my sinuses are still "relatively" clear, and that we should just try to fight the infection that's there with antibiotics, and if things don't get better, then maybe surgery. This is not my favorite answer, but I guess it's what happens when you agree to go to the hospital before things get really rough with your health. While I'm here, I'd like to hit everything with guns blazing, including getting my sinuses completely cleaned out - but, when some health issues are just so/so, I find the doctors reluctant to commit to hardcore therapy. I hope this doesn't mean I'll just land back in the hospital three or four months from now with more infection because my lungs got cleared up but not my sinuses.
But enough with the negatives and on to happier thoughts! I love how the Lord also uses these times I spend in the hospital to encourage me and pull my heart toward Him. I enjoy talking with all the nurses, and PTs, and RTs about life, law school, families, the Olympics, whatever (though, admittedly, it sometimes feels a little awkward when the nurse or RT is in the room for treatments and I feel obligated to turn on the TV or something for some noise when I'd really rather just sit and read or work!). It delights me when conversation naturally flows into a discussion about faith. It's also been a neat time for me and husband to be loved on by our home group from church. Being in the hospital also presents PLENTY of time to just sit, read the Scriptures, study, and pray. Most importantly though, I think, is the renewed sense of dependence I have on Him - in this crazy life there is so much out of my control, and I honestly don't always do so great managing those few things that ARE in my control (ahem, exercising and therapies…). But I can sit firm in the knowledge that He loves me, He seeks my heart, He teaches me, and He provides for me, no matter how many times I screw this up. Time and time and time and time again He has shown this. What I cannot control, He holds in His hands; what I can control (exercising, therapies, etc.), He can give me the strength to pursue and persevere. And ultimately, all this is part of His grand design to work all things to His glory.
So, there's my update for now. Hopefully by the next blog I'll be back in the swing of things!
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