Tuesday, September 13, 2016

Picking Up Groceries

Tonight I used the Walmart Grocery Pickup for the second time. I'm officially a fan.

If you haven't heard of it, some Walmart stores are now offering Grocery Pickup, which consists of ordering your items online and, you guessed it, picking them up at the store. No walking through the store involved.

You can order deli meat and cheese, fresh meats or veggies, household items, pharmacy items, toiletries, cosmetics; there is an impressive amount of stuff available. Building a cart online is super easy, you reserve your time slot for when to pick them up, pull into the designated spaces next to the store, call to tell them you're there, and then they bring out your stuff. It's awesome.

Moms are loving it because they don't have to drag their children through the grocery store. I am loving it because of my health issues. There are some times where I just don't have the energy to walk through the store. And I cannot tell you how happy I am that this is now an option for the upcoming cold and flu season. I won't have to walk through the store and potentially immerse myself in everyone's germs.

The first time I tried it all told my trip took about 20 minutes, from the time I pulled up and called to let them know I was there, to when they were done loading my groceries in my car—which is still at least half the time I'd spend in the store. This second time only took 8 minutes. And they've given me a complimentary bottle of water both times since it's kinda hot. Nice touch!

I promise I'm not getting paid for this post haha, but I wanted to spread the word because I'm hoping this program is here to stay. If you are interested in trying it out at your own Walmart, email me and I can give you my code to get $10 off your first order (I get $10 off too.) It's not available everywhere, only select stores, so you'll have to check if your store offers it. Honestly, I think this will stick around because I see this as the way of the future. I can totally see a future where Walmart has a set of retail stores like they have now, and another building that is just a straight up warehouse where workers pick your items for Grocery Pickup. There isn't really a storefront, there wouldn't be any cost to make the store look nice, just people getting your groceries together and you driving up.

Friday, August 26, 2016

Friday Fast 5

Five quick things!
  1. I've been in the mood to do some "fall cleaning." What is it about the change in seasons that seems to motivate many of us to tackle our crap? We didn't do a spring clean this year, but I've been itching to get rid of some things. Yesterday I started getting to work and filled two trash bags with stuff, and started parking outside so I can put stuff in the garage, haha. 
  2. I love Hill-Rom, the medical equipment company. My vest machine that I use that is essential to my health had started showing big time signs of wear in the past week. I first noticed it on Sunday. It worked fairly ok on the lower settings I do but had a hard time keeping up on the ultra high settings. It was like it couldn't force enough air into the vest to actually pulse it against my body, it was just loosely shaking. I checked the hoses for leaks, I checked my vest itself for holes, and didn't find any so that wasn't the problem. I got my latest vest machine back in April 2013. I pulled out the manual to see what the lifetime expectancy on it was, and it was two years with "normal use." Who knows what normal use is, but I suspect I use it more than normal since I do 3-4 treatments a day, instead of the normal 2. I've clocked 1333 hours on it. I called them on Wednesday, explained my issue, she looked up the serial number for my vest, and I assume it showed her I've had it for over 3 years, well past the life expectancy. She was overnighting me a new one and I should put my defective one in the box to ship it back. I repeat: I love Hill-Rom. I don't think I would ever switch vest manufacturers simply because their customer service has always been so hassle-free. Usually nothing in the medical world is easy like this, so it's awesome that I don't have to jump through hoops for this thing that I need every day. They didn't ask for my current insurance, they are just sending me a replacement. That tells me they're committed to providing good equipment, and I am ever so thankful (now, getting an initial machine for your child can be a hassle depending on insurance, but thankfully these replacements are not.)
  3. Josie's birthday is tomorrow. She turns 4! I got her some cookies, some Frosty Paws doggie ice cream, and a new duck toy she can destroy. Can't believe we've had her for almost 4 years. In human years, she is turning 32 haha.
  4. I'm so ready for fall, as I think most are. Earlier this week was a bit cloudy and cooler, especially in the mornings, which was a nice little glimpse of things to come. Actually, I'm so excited I think I'm going to put up all my fall decor as soon as the calendar turns September.
  5. I've been growing my hair out since last Christmas and I think I've finally reached a length I'm happy with! It is similar to my hairstyle I had for our wedding. I don't want to grow it out super long, or even shoulder-length like I had in high school. I'm at a bit of a decision point though... do I want to dye it? or do like a wave/perm thing? or keep it straight? I loved having my short pixie cut, but was ready for a change. I am sure I will go back to my pixie cut at some point, but for now I'm excited to have options again!

Thursday, August 11, 2016

One Day More

Tomorrow I am scheduled to finish up IV meds. I'm so ready... I haven't had a shower since July 27th. Miraculously, I don't smell. I wash my hair over the side of the tub and give myself baby wipe baths, and thankfully that's enough to keep me moderately clean and presentable in the meantime.

I've been home since last Tuesday. I came home on two meds, one a full-time, 24/7 IV pump and the other running every 8 hours. The medicine I was on 24/7 ran slowly all the time. This was a first for me, I've never had this kind of setup at home but I figured it was worth a try. So I carried around "Chad the CADD pump" with me everywhere I went. Chad and me were friends.

The benefit to it is you only have to change out (refill) the medicine once a day. The other method would have been running the med every 4 hours, which would mean no more than 3 hours of sleep or naps at a time. I tried that once before and it was exhausting; it practically negated the benefit or desire to be home. Even though being hooked up constantly felt limiting, the IV pump was actually pretty small and light so I was able to get around the house ok, and I was allowed rest. But after a while it did get a bit cumbersome.

We ran into some issues starting on Saturday. I was having tingling and prickling feelings all over, which is very unpleasant let me tell you. If you could imagine your body is a hollow container, and it's full of lightning bugs, it would be like each lightning bug lighting up is a like a tiny prick from a needle, in a different spot every time and in varying intensities. We finally decided to stop the 24-hour med on Monday after trying a few things didn't alleviate the prickling.

I've continued on the other medicine and will finish with it tomorrow.

It's been nice to be home, but it'll be even nicer to get back to normal.

Tuesday, July 26, 2016

Heading In

I know, it's been a long time. I just haven't really been in the mood to write lately.

But, I figured that as always this is the easiest way to let everyone know... I will be heading in to the hospital for a regular tune up this week.

I've been coughing more and more in the past few weeks, and I've hardly gotten a full night's sleep in well over a month, at least without the help of some super strong cough syrup. Maybe one night a week I'm able to sleep the whole night through, but it hasn't been much.

We have a game plan already figured out, which is the way I prefer to do these things if at all possible. I do a PFT ahead of time and also provide a sputum culture so we can figure out before I get there what we're up against. Otherwise, it's potentially wasted time because my sensitivities to drugs and what kind of bacteria I'm culturing change regularly.

This time we are dealing with only ONE strain of bacteria that is fairly resistant, but not entirely, and my only options are all stuff I'm allergic to. Not the best news, but definitely not all bad since there is only ONE enemy this time to fight. So I will be admitted straight to the ICU to get the desensitization process going first thing, instead of, again, wasting time and spending one day on the floor doing nothing (but still paying for it, of course) and then going to the ICU on day 2. No thanks, I'll just get the ball rolling asap please.

As an aside, in case anyone is lost, a little CF301: Sputum Cultures here to explain everything I'm talking about. Every time I come in the hospital or a clinic appointment, I do a "sputum culture" which is where you cough up something and send it off to the lab. It takes 5 days to complete, because the ones they do for us CFers are very detailed. Once at the lab, they determine A. what bacteria are growing and B. the drug sensitivities of said bacteria/bugs. The two biggest players in the CF world are staph (particularly MRSA) and Pseudomonas. There are others bugs that are bigger concerns, but those two are the most common. There can be different strains of the same bacteria. Each one is different, each one can have different sensitivities. When I say "sensitivities" it means if the germ is "sensitive" or "resistant" to a specific medication. As in, a medication will work with something that is sensitive, but it won't if the strain is resistant. This is why sometimes, if you catch bronchitis and the antibiotic the doctor gives you doesn't work, it's because the bacteria you have is not 'sensitive' to the med and it needs to be switched. Except, for the average person, they're probably not going to run a sputum culture just to figure it out because most people don't have very resistant super special bacteria. I'm just special like that.

Randomly, I was going thru old emails today and found a culture from this exact same time last year with what appears to be the exact same strain. It had the same sensitivities and everything, so maybe this one has settled in for the long haul. However, at this time last year, there were 2 other strains of bacteria too, so that's why I am VERY happy to see only one came back this time. I guess we won the war against the other two—for now—so they have been banished from the land that is my airways.

I'm expecting this stay to be a bit different because I won't be on my usual floor. It is currently under renovations and apparently even when they do reopen it, they are short on nurses and aren't sure what they're going to do. So I have no idea if I will have the same nurses as before or not. I'm guessing not, which will be a shame. I always enjoy seeing some of my nurses. You develop a kind of friendship after a while, seeing them as often as I do.

But I'm feeling good and hopeful about this stay. I'm not as sick as sometimes where I'm in such dire need of meds, but I'm still definitely sick enough to constitute what we're doing. So I'm hoping that bouncing back won't be as difficult.

Tuesday, June 21, 2016

A Wonderful Vacation

Jarrod and I returned Sunday afternoon from a wonderful, nearly perfect anniversary vacation to Branson. We are celebrating five years of marriage!

We started our vacation Thursday morning eating breakfast at Cowan's. Jarrod had never been there before, so it was high time we went, haha! It had been years since I had gone there too.

A really beautiful sunrise Friday morning from our window.
Friday we rented a boat and went out on Table Rock Lake for four hours. The weather forecast was a little iffy, with a 40% chance of pop up rain/storms, but it turned out great. It wasn't too windy, it didn't rain or storm. It was pretty hot and humid, so the water felt good.


Saturday, on our actual anniversary, we drove towards the dam to a viewing area you could pull off onto. There was a road we found, and we weren't entirely sure where it would end up, but it came out down near Tanycomo, where trout fisherman could wade in. This fisherman was nearby and he became the perfect subject for taking photos:

Oh, and: goose butts. Hahahahaha!


We were in Table Rock State Park, even though we were next to Lake Tanycomo (which, Jarrod informed me: Tanycomo is named for being in Tany County, like Tany Co. Mo.? Someone must have been bored when they named that lake.) There was an entrance point to the trail system and we decided to do one of the loops, and I crossed one thing off my bucket list: go hiking! Yay! I brought my camera with me, and was having fun taking pictures along the way. But the bigger deal here is that I hiked! I kept a good pace and of course I was breathing hard at times, but I'm so happy I was able to do it! It had some steep inclines and uneven rocky terrain, but Jarrod said that it was very well-marked and a pretty good trail. But next time, we'll bring bug spray and do a Map My Route at the beginning for fun. Live and learn, haha.

Light in the forest.
We had dinner at the White River Fish House, which is actually Bass Pro's restaurant down on the Branson Landing. It was really good! I would recommend it. Afterwards we came back to our hotel bar to enjoy a cocktail and to our surprise, around 9:00pm a piano player arrived to play on the baby grand.

He was SO enjoyable! It was absolutely delightful listening to him. His improvisation was incredible. He asked for requests and would play from memory, or make it up, or a little of both. He never looked at a piece of music the entire time, it was all in his head. One woman asked for "Dream A Little Dream of Me" and he got up to hum a few notes with her to establish he remembered the song, sat back down and said "Ok, I got it. I'll throw in a nice bridge in the middle." He came over and asked me for a request at one point, and asked if I sang. I said "Ehh... sometimes." He said I looked like a singer or a dancer, he thought maybe I was "in the biz" there because I "just had that smile, that confidence about you." Aw... :) I requested "Singin' In the Rain," and he made that one up as he went but it was spot on. He played ragtime, musicals, he played pop songs in the style of a jazz tune, he played a jazz tune in the style of a waltz. It was wonderful.


Turns out he is there most Friday or Saturday evenings, and when I looked him up online, found in his bio that he has worked with numerous television shows/specials as a composer, conductor, or musician; Dick van Dyke, the Tonight Show, Matlock, Donnie and Marie Osmond, Sammy Davis, Roy Clark, Jack Benny, the Academy Awards, plus tons more and he moved to Branson back in the 90s to play and conduct for Andy Williams at his show there. Now he plays at the Chateau on the Lake. If you are ever in Branson on a Friday or Saturday evening and you want to hear a talented jazz pianist, you have to drive over to Chateau to listen to this guy.

Sunday we ate breakfast and played one last round of mini-golf before heading home; mini golf is one of my favorite things to do in Branson since there's an abundance of courses. The breakfast spot was Billy Gail's, which came highly recommend by my mom's friend, Gwen. They offer free coffee while you wait, and it was possibly the best pancake I've had in my life. Yes, pancake, singular, because the pancakes are colossal. They're larger than the plate and bring up visions of Uncle Buck trying to flip a pancake with a snow shovel.
Me and my pancake. Seriously, how do they flip this thing over?
All in all our trip was so wonderful: great weather, great time, things went well, hardly any hiccups, and pretty much all of the places we ate at were good or awesome.

If you'd have told me five years ago that on our 5th wedding anniversary I would be hiking through the Ozarks, I don't think I'd have believed you. Actually, I know I wouldn't have because back then I wouldn't have felt it would be possible for me to do it. These past five years married to Jarrod have been so good, and I look forward to many more.
Sunset from the lookout point on Saturday evening.

Thursday, June 9, 2016

Oh What A Beautiful Morning

I wouldn't describe myself as a morning person, but maybe I'm a semi-morning person. I have a hard time getting out of bed, as of late I'm lucky if I'm out of bed by the time Jarrod leaves for work at 6:45am. But once I am up, I am UP and ready to get things going.

This morning, I woke up at 4:00am coughing. I got up, got some albuterol, sat up for a bit, went back to bed, couldn't fall asleep, and got up at 5:15. I already feel like I've done so much!

I love sunrises, and I've enjoyed seeing the sunrise this morning. I've also been delighted to watch the birds up and about. The birds chirp and tweet a lot during the wee morning hours, if you've never noticed, and they have been busy busy gathering bugs for breakfast. I should have had my camera out because a robin, a bluejay, a cardinal pair, and some sort of crow all stopped by on the deck to perch.

In addition to staring out the windows a lot, I did my treatment, finished a Netflix movie, ate pancakes for breakfast, got Jarrod's lunch together, put a load of laundry in, showered, and now I'm writing about it all. And it's STILL not even 8:00am!

I love feeling so productive, but man... when the alarm clock is going off it is so hard to get out of bed.

Thursday, May 26, 2016

Right or left ?

Are you right-handed? Or left-handed?


I'm right-handed in writing, but I'm a bit of a mix-up when it comes to dominant sides. I've been recently reminded of this with the camera I got for an early birthday present.

I decided to try putting my right eye on the viewfinder and realized that cameras are built for right-eye dominant people, just as most things are made for right-handers. I'm left-eye dominant so instead, my oily nose smushes up against the back of the camera and always leaves a smudge on it.

But my confusion doesn't stop there. I also play sports semi-left-handed, haha. I golf as a lefty, bat as a lefty, play tennis as a lefty, but I shoot pool as a righty, throw a ball with my right hand, and if I hunted I would shoot with my right hand (and with a dominant left eye that would make things kinda complicated.)

I was wondering if handedness is genetic, since my mom is left-handed and my dad is right-handed. Scientists suspect that it is genetic, but not in the traditional sense that explains why I have CF (I do), if you have red hair (I don't), or which of your toes is longest (my second one.) All of those follow the standard dominant/recessive patterns. Genetics have always fascinated me and I would love to look at a whole bunch of data on traits people have and inherited, just for fun.

So I have no answers as to my odd combination of the two, but I have yet to hear of many other people who have things both ways like I do. I know they are out there, but again, I'd love to see some data on just how many of us there are. So I ask you, are you kind of a mix when it comes to right- or left-handedness like me?


 
As a side tangent, if you're unsure which is your dominant eye, there's a little trick you can do to find out. I didn't figure this out "officially" until a few months ago, though I've always closed my right eye in times where you need just one eye open; I just didn't give it any thought.

Friday, May 20, 2016

Friday Fast 5

  1. Wow! It's been a month since I wrote anything on my blog.
  2. I've decided to try and cook one new recipe each month, and on Tuesday my new dish for dinner was Mongolian Beef. And it turned out awesome! I was so happy. I made the sauce, cooked the beef, got the rice and noodles ready and it all tasted so good. Jarrod said it tasted better than the restaurant versions he's had, so woo hoo! If anyone wants the recipe, email me. 
  3. A bit of advice when making Asian food at home: Jarrod and I have found that you must make your own sauce. It's more ingredients and a little more time, but it makes your kitchen smell oh-so-good and tastes 100 times better than sauce you can buy in a jar. I have another copy-cat recipe for PF Chang's Spicy Chicken where you make the sauce, and it also tastes great. We've tried going the easy route and buying the Panda Express orange chicken sauce and another General Tso's sauce with lackluster results. It doesn't end up tasting like takeout, and it doesn't taste all that great either. So, it's all in the sauce!
  4. Last week was a stormy week. Thankfully, we were spared some of the worst. But Josie was stressed out a bit more with the bad weather. I went downstairs with her a couple times, which seems to be the best way to handle her storm anxiety so far. We sit in the back treadmill room where the wind, rain, and thunder cannot be heard much. More than anything, I'm trying to establish a consistent place for her to go, and hopefully this bit of training is catching on... slowly. I watch the radar on my phone and once the coast is clear we come back upstairs. 
  5. This year midway through Lent, I decided to give up Facebook on my phone. Once Lent was over, I talked about how I might keep it up most of the time in another blog post. Lent ended almost two months ago, and I am still keeping up with it! I am very, very happy with my decision. I log out of my Facebook app every time I am done using it, and for me that has been the key to keep me off of it. Being met with the login screen each time I open the app is like a stop sign for me to mentally ask myself Do I REALLY need to check Facebook right now? Why am I doing this? and sometimes I log in and see what's up, and sometimes I just close the app and leave it alone. On the rare occasion I don't log out when I'm done, it's like my brain knows that the cookie jar is wide open so it just wants to keep going back for more and more treats (excuse my metaphor, but I thought it worked haha) and sure enough, I find myself coming back to Facebook 3-4 times in an evening, just like old times, scrolling through hoping for something new. If you're wanting to reduce your social media time, this plan of attack would be my suggestion. It still allows you to get on there, but that tiny little pause is enough to break the habit of just opening the app over and over without thought.

Wednesday, April 20, 2016

OMG You Guys!

I just found out today that we here in our little city will be in the pathway of a TOTAL Solar Eclipse next year, the one happening on August 21, 2017.

What an awesome, once in a lifetime event! The last total solar eclipse to cross the continental United States from coast to coast like this one happened in 1918... so yeah, kind of a big deal.

If you weren't aware, I'm a bit of a space junkie. I have always loved space, it was one of my three topics I was really interested in as a kid (the other two being Native Americans and the Titanic.) My favorite planet is Jupiter, and I felt sad the day they announced Pluto got demoted from being a planet.
Pathway of the entire eclipse.

Now that I'm older, I still love space and I am constantly in awe with the news and discoveries coming from the universe, like this year when scientists announced they had proven the existence of gravitational waves, which is a theory by Einstein. They constructed this massive detector with lasers and math beyond my comprehension to measure the waves, which are ripples in space time, hoping they might find one, and just for like a nano-nano-nano-second of time they had a blip on the charts which thus proved that indeed a wave had passed over the earth from a black hole that formed 1.29 billion years ago. Like, does that not just totally blow your mind? Mind officially blown.

OK, back to eclipse stuff. I keep saying total solar eclipse because that "total" part is a big deal. Partial solar eclipses are more common, where the moon blocks out part of the sun's light, making the sun look like a glowing cookie with a bite out of it. Total eclipses are rare, and even less common during daylight when it will be noticeable, like the one coming next year. This is the kind where the entire sun will be blocked, you will only see a ring of light around the moon, and the land will be in total darkness during the middle of the day. How. friggin'. cool.

In our particular spot (this is important) the sun will be completely covered for 2 minutes and 28 seconds, quite a long time. The longest duration is 2 minutes 40 seconds, and that will happen near Makanda, Illinois. So we've got a nice long chunk of time to observe the eclipse. And if my calculations are correct, it will happen from 1:15-1:18 p.m.

You can see the path of the eclipse in the map below. The red line is the central path, the blue lines are the limits of where you'll be able to see it. As you can see, we are very near the central path; St. Clair and Leslie are nearly dead on, St. Louis proper is just out of reach.


So that's my excitement for the day. I'm marking my calendar. Maybe I'll listen to some Pink Floyd. Space nerds from all over the world will travel to the US to see this. We just need the weather to cooperate. How disappointing would it be if it was raining that day?!

Thursday, April 7, 2016

A cold is not just

I realized I never blogged my results. Sorry about that!

So after all those days of coughing, and the tests, it all came back to say I had a cold and a pulmonary exacerbation, which is the typical pulmonary thing I have when I go in the hospital. 

But boy, this sure was a doozy of a cold. And it didn't even feel like a cold! I didn't even have nasal symptoms until Monday. And even stranger, kind of, is no one has gotten sick from me. I'm relieved, obviously, but also because I always ask that everyone let me know when they're sick, and I feel bad I couldn't return the favor. In my defense, though, again, it just didn't feel like a cold or anything that was contagious, it felt like CF stuff. I almost wonder if I got a cold mid way through my pulmonary issues. Who knows. 

I'm doing better, but if I exhaled sharply for you, you'd hear how awful my airways sound; similar to a 70-year-old smoker kind of hacking. So I still have a long climb back up. And based on everything I've been hearing about cold season, even NORMAL people are getting colds that last 2-3 weeks. So this might take a while. I have no idea why the cold virus going around here has become so strong. 

We've said it before but this is proof in the pudding that a cold just isn't a cold for someone with CF, it can be a dire, possibly-send-you-to-the-hospital situation. Cover your coughs, folks! Haha