Home again

Monday I went in the hospital for my usual tune-up. Things were fairly normal, yet not.

I went straight into the ICU for my "desensitization" to the one IV med. Have I ever told you how much I hate this? My mind's a bit fuzzy right now thanks to all the Benedryl, maybe I've written about it before, but yeah. I very much dislike having to go through this process. This hospital requires I do this in the ICU for close monitoring, which I understand, but that means I am hooked up with the telemetry wires, a blood pressure cuff, and oxygen SATs at all times. Plus sometimes I'm hooked up to an IV pole.

So... getting up out of bed—like, to use the bathroom, or just to get up and move, or get something out of my backpack—requires assistance. Even rolling over while trying to sleep is a chore, and I barely got two hours' sleep that night. I was super cranky on Tuesday. (Oh and in the ICU, there pretty much is no bathroom, it's just a toilet in the corner like you're in jail. I've gotten over the initial shock of this, because the truth is that most people who are in the ICU cannot walk and will not use it anyways. I'm a rare case, and there for a very specific and rare reason, and my nurses almost always comment on their surprise on how I just walk myself right into my room; it's just not what they're used to.)

Long story short, things didn't go quite as smoothly this time. I think I was in a bit of denial, but I have to call it like it is: I was having a reaction to the med I'm allergic to (the one we did the desensitization with.) I guess the desensitization didn't work as well this time? I don't know.

So from Tuesday morning until Thursday, I was dealing with varying waves of fever, chills, rash, and itchiness. We finally upped my Benedryl on Thursday and that helped immensely, and I haven't had issues since. They felt okay to send me home yesterday, and I felt comfortable to come home as well.

Mostly I wanted to come home, in part because of the obvious reasons you'd think of like sleeping in my own bed and not being bothered by beeping IVs. But also because the hospital no longer has a treadmill for me to walk on while I'm there.

We CFers used to have a nice little place to exercise while we were stuck in the hospital. It had an elliptical and a treadmill, and a few weights and things I don't know if anyone ever used. There have been more changes to this little 'exercise room' than I can count, and apparently in the most recent moving of the room, the treadmill broke. This was possibly the most ancient treadmill you could imagine, I'd never seen another one like it. I would say it was probably from the 80s, so I guess I shouldn't be surprised, but it still sucks. I can walk the halls all day long but it's not going to get me a decent cardio workout like I could get on the treadmill. Exercise is an important part of the CF regimen, and especially in trying to gain back lung function from a tune-up, so it's very disappointing to me that they don't have this anymore. The elliptical is too big for my small stature, and too difficult.

All that to say: I wanted to get home quickly so I could get MOVING again.

And here I am, sitting on the couch. I'm taking 50 mg of Benedryl three times a day, before each med dose, so I'm a bit groggy and I hope this all makes sense. The plan is the usual: two weeks of this and hopefully I can then stop my meds.

I'm still finagling with the timing of my IV meds, so I had to get up at 3:30 am this morning to give myself a dose. But, I actually had something to watch this morning with the royal wedding and all. I dozed off a little here and there as guests arrived and woke up with a startle as the trumpets blared (truly blared) to announce the arrival of the bride. I promptly fell back asleep around 9am after everything was over, and Jarrod was awesome and took care of a lot of small chores this morning and made me breakfast. It's good to be home.

Good News

Good news on a couple fronts lately.

For starts, it's been 7 months since I was in the hospital! Anytime I can make it past 6 months I am elated. I am feeling pretty steady, and I think there are a couple changes I've made that are helping in this area. Here's hoping I can keep it going for a while longer.

Secondly, I've been doing my allergy drops since the end of January (I think) and call me crazy, but I already think they are helping. Right now should be prime time allergy season and I should be feeling like complete crap, but I don't! I keep waiting for it to happen, but it's just not happening. It's the strangest thing. I actually googled it, and some say you can start seeing benefits from allergy drops as early as 8 weeks, which would mean I'm not totally nuts. 

If this is just the start, and things will continue to get better, gosh I am so glad I chose to start doing this. Allergies have gotten so much worse for me in the past 5 years or so, leaving me up coughing almost all night long due to all the extra drainage from my nose. I know, for sure, not having such severe symptoms has also helped how I'm feeling overall, and with the whole '7 months no hospital' thing. 

Friday Fast 5

Five quick things!

1. We saw Hamilton on Sunday! It was really good, a very impressive show. The writing/music is quite a masterpiece. That being said, I can't say it's my new favorite musical. My favorite either has to be Wicked or The Lion King. This is up there as one of the good ones, and I'm really glad I saw it, but I don't know... I guess I've been conflicted with this because there is so much hype around it. What am I missing here? But if I'm being completely honest, it didn't totally blow my socks off. I chose to NOT listen to the soundtrack and familiarize myself with the music ahead of time, which I've done on nearly any other big show I've seen. I mean, I knew a couple of the songs, I could have sung you "Alexander Hamilton" in the specific notes, but I didn't listen and memorize it all. I've been wondering if that was why I felt how I did? It was REALLY good, but for me it wasn't the best show ever on the face of the earth. 
2. I also went to see Godspell at Borgia last night, and it was good. They took a slightly different spin on the show, but a very modern one that felt right with the times. 
3. I finally was down in Chesterfield valley and drove past where they are building Top Golf... Holy. Crap. What a monstrosity that thing is. I can now understand why some locals weren't too happy about it being right there. That being said, I'm curious to try it. I've never played golf in my life, and don't intend to, so this would be my only opportunity to swing a golf club outside of putt putt. I expect I will be equally as bad at it as I am at bowling...
4. ...the last time I bowled, for Jarrod's birthday, I got a 68. I'm just that good.
5. I'm really bummed it will be cold again on Sunday, gosh I'm ready for this spring weather to stay here!

Friday Fast 5

Five quick things!

1. I really can't believe Sunday is Easter. Holy cow, where did the time go? Is this the earliest Easter has ever fallen? I think part of the reason it seems weird is because it's still so cold and rainy here. Spring is hardly anywhere to be found. I saw our Easter photo from last year, and I was wearing a sleeveless dress. Granted, Easter was two weeks later than this year's but still. I haven't even switched my closets over to my spring/summer wardrobe yet, it's been too chilly.
2. Jarrod turned 30 on Wednesday! In the morning I picked up doughnuts from Schulte's for him to take to work and we went out for Korean BBQ after work. I'd never had it before, but he had it a couple times in California last year and really liked it. And it was good! I was proud of myself for trying a bunch of stuff too, kimchi for one (it's not for me, but hey, I tried it.) Turns out tofu isn't that bad, especially if it's been cooked a little. 
3. It's funny, though... for both of our 30th birthdays, I realized we went to places where we had to cook our own food, haha. For mine, he took me to the Melting Pot, where you cook your meats in your fondue pot of boiling broth. And for the Korean BBQ, you cook your meats on the grill in the middle of the table. Both of them were also a LOT of food.
4. Trivia Night is coming up, and I've been busy finishing things. I can't believe it's a week away! As always, if you're interested in getting a table together, it's April 7, let me know and I can send you the flyer.
5. I bought Josie a new ball and it's turned out to be one of my best purchases. Josie absolutely LOVES to play ball. She chews the fuzz off of tennis balls, so a racquetball proved the best kind for her. But ever since we put in hardwood, playing ball became downright dangerous. Since the racquetball is so rigid and made the way it is, it bounced all over the place on the wood floor. Not only did Josie slip and slide everywhere trying to catch it, I started to fear for our home. One wrong bounce could send it flying into something breakable or leave marks on our walls. We had to only play ball outside :(. On a whim, I bought her a new ball. It's not perfectly round, and the material has more give to it, all meaning that it doesn't bounce all that much. It's great and she loves it. Woo hoo!

Shop Small

I had a conversation with a woman who owns a local business in our small town. While I was making my purchase, I also asked her about donating a gift certificate to an event I was chairing. She said she couldn't, but could offer some coupons for free coffee. Then we had a nice little chat.

In a matter of words, she basically said how she gets these requests all the time (she said she kept a notebook one year, and they were almost daily.) As much as she'd love to support everyone, this is the best she can do. Otherwise she would go out of business.

I've been thinking over our conversation ever since. She was so friendly, and I greatly appreciated her donation and her openness and warmth. I told her I was new at all this, and I was completely surprised to hear that almost every day, someone else just like me is asking her for something.

I've lived here almost my entire life. I've seen our small town expand and grow and bring in a lot of chain stores and restaurants. And while that's exciting and good, to a point, it also means it gets that much harder for the little local guys to compete. I am still saddened that our Benjamin Franklin 5 & 10 (a.k.a. Annie's) had to close years ago, and I realize it was probably due to us getting a Michael's store. I can list off a handful of nice fine dining establishments that have gone out of business too. And those are the ones just during my lifetime.

Towns and cities are constantly changing, for sure, but with the added competition from online sales and the convenience of two-day Amazon shipments, it has to be harder than ever to run a small business.

I really like the sentiment and meaning behind the phrase "shop local" or "shop small." But in truth, I'm not the best at putting my words into action. Maybe you struggle too. After that conversation, I realized I need to work on changing this.

The big chain stores are hard to ignore, with their large buildings and big, bold signs in high-traffic areas. But there is definitely something to be said for paying a little more to support a small business. Getting the lowest price on anything and everything is not the point of life. If it were, we would all be wearing sweatpants from Walmart and eating McDonald's (because seriously, can you believe how cheap their food is now?)

It's not going to happen overnight, like all habits it will take some time. And I'm not even arguing buying everything you possibly can from local shops, because I realize most of us live on a budget that might not bend and flex.

But prioritize.

Everyone laments when a small business announces they will be closing... for good. I have seen it time and time again: the shop announces on Facebook they will be closing their doors. And how they love this community and are sad to leave, but they just can't keep going. And they want to thank their customers and support they've received. But they have to do what they have to do. Many people swoop in with sadness over the news, claiming they were their "favorite" or raving about this or that, but words like this do not equal dollars.

If there is a shop you really like, make a point to go in there more than once a year. I'm certainly guilty of this, only patronizing a couple businesses around Christmas time. When I walk out, I'm always like "Why don't I come here more often?" I'm a big believer in putting random, mundane things on list apps so why not include something like this? Add "Check out what's new at _______"

And while sad comments about a shop going out of business don't equal dollars, you know what could? Good reviews.

Reviews really have become the keystone of online purchases and decision making. It started with Ebay sellers and knowing you wouldn't get ripped off, to Amazon with product reviews, to Yelp, to TripAdvisor for places to go, to Facebook, on and on. So if you can't afford to shop somewhere, you can certainly afford to give them a great review so someone else can. It only costs you a little bit of your time. And in some places (like Facebook) you don't even have to write anything, you can just rate them.

I adore this little store that I went to. It offers more flavors of coffee than I've seen anywhere else, plus loose leaf tea, plus a myriad of other cute and useful household items. I would be truly, truly saddened if she ever had to close her doors. So starting now, I'm going to make a concerted effort, until it becomes habit, to go to her store more often. I can afford to pay just a little more for a bag of coffee beans.

Another lady opened a book store last year here. It is the most adorable book store, in a little historic corner house. It's warm and inviting, and everything a small-town bookstore should be. Last week, I messaged the owner asking if she could order a book for me. I know fully well I will pay full price for it, whereas I could just order it off of Amazon for 30% cheaper, but right now I don't care. Walking through her store is so... up-lifting. Back in college, when I drove away from a Border's store for the final time after their going-out-of-business sale, I almost cried because I thought this was the beginning of the end of book stores. I love book stores, but buying all my books from Amazon does nothing to keep book stores alive and well.



You have to admire small business owner's for their willpower, too. I know I don't have the guts to do it. With the entire world seeming like it could be against you, with cheaper prices or fast convenience or better roadside placement, it has to be exhilarating and frightening to take the plunge. You have to admire those kinds of dreamers. Those are the kinds of people who truly believe in their community. Who believe that, no matter what, it was worth a shot, because had something to offer; they bettered their community and the lives of their customers.

When you think of it like that, who wouldn't want to support them?

*Today was Mom & Pop Business Day, and inspired me to finally publish this post. I hope it inspired you a little bit :)

Friday Fast 5

1. I am really trying not to be paranoid, but with all these stories about the bad flu season we are in, and cases where normal, healthy kids are dying, it's hard not to. I still have to live my life, though, but I'm cautious. I don't make unnecessary trips out; I don't browse around stores for the heck of it, like I might during the summer, things like that. I have Jarrod make small trips to Schnucks when I can, instead of me going. And I still attribute the two habits I have mentioned on here to my [so far] success in avoiding colds and the flu this season. I also try, as much as possible, to keep my distance from people no matter what. That's about all I can do without being confined to my house for 4 months. And that sounds like zero fun and no way to live your life. 
2. Jarrod and I officially joined the Jaycees at the end of last year. We've jumped in with both feet, Jarrod being the new webmaster and I am... planning a trivia night! I've been busy writing questions and organizing everything for it. It will be April 7th, starting at 7pm at the VFW Hall in town. If you're interested, let me know and I can send you the flyer. Or contact me to reserve a table! 
3. I've started crossing something off my bucket list: I'm learning how to sew! Since Toni in town retired at the end of the year, I gave in to the fact that it was time for me to learn how to hem pants. Both Jarrod and I always need to have our pants hemmed. Mom's good friend Gwen is teaching me! I had my first lesson in November, and actually hand-stitched a pair of Jarrod's dress pants at Christmas! I was so proud of myself. I'm glad I finally decided to give this a try, because it's really not as hard as I thought it would be. 
4. We are looking forward to the Olympics. Jarrod likes the winter games more than summer games. We actually signed up for Sling TV for one month, then we'll cancel it, so we can watch more than the highlights they run on channel 5 in the evenings. 
5. Josie is getting pretty scruffy these days. Her face is in the "slightly shaggy but adorable" phase that I really like, but the rest of her hair is getting long. Problem is, it's still pretty cold out and I'm hesitant to groom her anytime soon. She just might be a shaggy dog for another month or so.

Josie and the Beeps

Years ago, there was a terrible thunderstorm in the middle of the night. Lightning struck a house on the street right next to ours, causing a huge boom. It freaked Josie out, who was laying on the bed. When it happened, it also made my oxygen concentrator beep due to the surge. All of it, combined, made her want to run for it. To where, I have no idea, but we tried to keep her on the bed with us. Knowing what I know now, that was probably not the best thing for us to do, but we had no idea.

Ever since then, she has been scared of thunderstorms, especially ones at night. I've worked with her a lot to try to calm her fear and redirect it. If possible, we play or go in the basement. And if she tries to hide under our bed, as I now think she was wanting to do that initial time, we usually don't block her. If that's where she feels safe, then we shouldn't try to stop that. That being said, my biggest fear with that (and still is) is that a storm might progress and get so bad that we actually NEED to go to the basement, and it will be hard or impossible to coax her out.

Anyways, lately I've noticed a new thing she's scared of: beeps.

I'm not quite sure where this came from except I can say the first time I ever noticed it was about 4-6 months ago when we had a beeping smoke detector in the basement. I actually asked my dad to come over and fix it around 11am, instead of waiting for Jarrod to come home, because it was bothering Josie so much.

So in this case, she shakes. You'd think she is shivering, but she's nervously shaking. Even up to an hour later, sometimes I still catch her having tiny little shakes.

This is on my mind again because last night, as I was demonstrating my new glucose meter to Jarrod, we later noticed she was sitting in a corner of the kitchen, shaking. It took me a second, but then I realized that it must have been the tiny beep that my meter makes when I turn it on. Wonderful... this thing I'm now supposed to use 4+ times a day is going to make her nervous.

I love Josie so dearly, but I gotta say this is the last thing I feel like tackling right now. I'm going to have to do some good research on training her out of this, because this is not going to be good if we let it go. Fortunately, it doesn't seem like our alarm system bothers her, and maybe because that's predictable. She knows this thing in the house beeps when we leave, and it beeps again after we open the door and are back home, which is almost always followed by the sound of the garage door. But even the other night I was watching Star Wars, and I noticed her ears move every time R2-D2 made his beeps and boops. Luckily she didn't start shaking, but she was definitely noticing it.

Le sigh... I can turn off the beep on my glucose meter, which I might do, but still. We really need to fix this problem before it gets any worse.

The Sugar Results

As I mentioned in a previous blog, we found out my blood sugars were high in December, and I am officially now considered diabetic. Today I had my first appointment with my diabetes doctor, aka endocrinologist.

First off, I think I'm really going to like him. He has his wonky moments, I noticed, but he really knows his stuff. He spent over an hour with me at my appointment. He explained things so well and took his time and never, ever gave me the impression he was just trying to move on to the next patient. It was really nice.

As I said before, CFRD is its own type of diabetes. It has aspects of Type 1 and aspects of Type 2, so it's a bit more complicated to treat.

The biggest question—and anxiety—I had going into this was: will I need insulin or not? Everything on the CF website said the only way to treat this is with insulin. He echoed those same sentiments today, but luckily there is a bit of "phasing in" to this. Right now, he was encouraged to see my fasting level where it was. It's not on the high end, and tells him that most likely a small dose of long-acting insulin should work for me right now. There are two types of insulin: rapid- and long-acting. The rapid/fast stuff is what people use right around the time they eat. It involves counting carbs and math and figuring out how much you need so your blood sugars will land in their target area and not be too low. Long-acting is a once-a-day thing, and it does just that: it lasts a long time in your system at a consistent, smooth level.

Obviously, knowing nothing about what might be used, I was dreading hearing I would need (rapid) insulin at every meal. I'm so glad I don't need to do that right now. At some point in the future, I most likely will. He explained that our pancreas are always producing insulin, but due to the nature of CF, my pancreas will produce less insulin over time. So eventually, yes, I will probably add in the rapid insulin. But for now, and hopefully for many years, the long-acting stuff should do the trick.

So that's what I mean by "phasing in"... in future I will have to count carbs and deal with more insulin, but for now I can start out with less; kind of ease into diabetes care.

There is a chance the insulin will not work, though. He has had a few patients that can't tolerate insulin because it keeps their blood sugar at a constantly too-low level, so that is something I'll have to watch out for. If that happens then we'll try something else. For most people, this works, and I'm hopeful it will.

Not like I'm dying to stick myself, but I actually wanted to get a glucose meter, because I like data and knowing what's going on. Ahead of time, I checked our insurance drug formulary to see which meters were covered and I picked one out I liked. It seems that diabetes testing has greatly improved in the past few years, so thank goodness for that. There are many meters now that require so much less of a sample of blood to test, which means a smaller finger stick, which means less pain in my fingers. I am so thankful for that, because I must admit I was a tad worried what this might do for my crocheting hobby; wondering if it might make it more unpleasant and then I wouldn't want to do it as much. Plus, the meter I chose has an app and will Bluetooth my results to my phone. Considering all of the stuff I have to keep track of and remember these days, this sounds like a good convenience to have.

They happened to have the meter I wanted on hand, so they gave me one (yay freebies from drug reps!) I've already taken two readings so far today, and they are so small and light that maybe my finger aches for 30ish minutes after, but like if I press on my fingertips right now, I don't feel a thing. Hopefully that stays that way.

So for now, he wants me to test my blood sugars 4 times a day, basically. For two of my meals, he wants me to test before and then two hours after. That will give us a good picture of what's going on and we can have data for my follow-up in two months. And I'll start my Tresiba insulin once I pick it up tomorrow from the pharmacy. Tresiba ready!! (Darn that company for having so many commercials on TV with such a dumb, catchy jingle!)

Project Recipe

This week I took on a random project: organizing my cook books and recipes.

The whole idea bloomed from a realization that Jarrod and I have been eating many of the same meals the past 3 months. I already felt like I had a pretty good system down for meal-planning. But I improved on it this week and my hope is that it will remind me to try new recipes more often.

My meal planning system is as follows: I have a small notepad with recipes we commonly make and meal ideas written in it. They are as simple and generic as "grilled chicken" to more specific recipes like "Whole Wheat Spaghetti Carbonara." I pull out my little notebook when I'm building my list to go shopping, or placing my online grocery order. I buy ingredients to make certain recipes or meals, trying to plan out at least a week's worth of food. Once I purchase the groceries (and know they weren't out of an item) I then write the meal on a sticky note that goes on the fridge. Then I can look at my sticky notes and easily know what I have on hand to cook. If I skip this step, I feel lost. It's so easy to walk into the pantry and stare for ten minutes going "What in the world can I even make? I don't know what to make." Even though I keep a lot of food on hand, not all of it matches up all the time to make a full recipe.

So that was how I have been doing things for a while now: consult notebook with recipes, create shopping list, write out sticky notes. And it seemed to be fine, until my realization.

I decided to edit and update the first step, the recipe notebook.

When I get a new cookbook I like to go through all the pages and mark different recipes I'd like to try. I put it back on the shelf... and rarely pull it back out.

So I decided to ditch the notebook and move everything to a spreadsheet—a Google sheet, to be specific, so it's accessible anywhere and Jarrod can see it too. I added all of the things that were already in my notebook, and then came the new part: adding in any and every recipe I have ever marked to try. I added the name of it and where I could find it (ie, Betty Crocker cook book, page 254.)

While I was at it, I also organized my recipe binder a bit better. When I got married, my mom gave me a binder with a few recipe printouts from her to get me started, and I've added to it through the years. There were tons of magazine clippings and printouts I shoved in the back file pocket, never to be looked at again. I went through them all (and got rid of most of them, since my cooking style has changed so much from when we first got married) and typed out the ones I still wanted, and put those in the binder in their appropriate section.

I'm really glad I took the time to do this. All told, it probably took a few hours—spread across three days—going through everything and typing it out; I didn't want a partial list and need to do this twice.

But now I have my spreadsheet full of many recipes I've never made, and I am pretty confident that seeing those will keep them more 'top of mind' and I'll actually make more things.

Here's to better cooking in 2018!

Avoid the flu like you have CF

Since the flu season is really kicking up here, I thought I'd share my top 2 tips for avoiding illness. Ever since I've adopted these habits, it has helped greatly. I think I've mentioned these on here before, but here they are again.

1. Wash your hands immediately when you get home—I set my purse down, take off my coat, then immediately go to the kitchen sink to either wash with soap or use GermX. That way all germs stop there. And, obviously, for this to work you have to properly wash your hands for a little while; a quick rinse-and-go will not work here. Same with GermX, follow the proper instructions for maximum benefit.

2. Don't touch your face with your fingers or palm—This one took a lot of work, but now it's just another old habit. I never touch my nose, eyes, or mouth with my hands when I am out and about. I allow myself to at home (since I've already washed my hands when I walked in the door) but not while I'm out of the house. If my nose itches, I use the back of my wrist or lower sleeve; basically a surface that has not come into direct contact with other things. I also use my elbows and the side of my body to open doors to avoid touching the handles, if possible.

Being at high risk, and since it's a really big deal if I get sick, I realize I am hyper-aware of this stuff compared to the average joe. There are SO many surfaces we encounter that no one ever wipes down such as menus (sometimes wiped down quickly with a cloth, but who knows how clean it is), freezer/fridge door handles, elevator buttons (I push these with my elbow if possible), soda fountain buttons, buttons for anything really, credit card pens, touch screens, gas pumps, railings, the pen your waitress brings you to sign the receipt (BYOP, I say—bring your own pen; I almost always use my pen from my purse), shopping cart handles (though some stores offer wipes now, which is nice), food trays, on and on.

Avoid germs like a person who has CF, haha!