Holidays are great and all but I'm kinda ready for them to be over. Yes, I'm very excited to have people over tonight but after that I am ready to get back in a routine. It has been really hard to keep up with all of my treatments and exercising with the holidays; not to mention we had some sort of Christmas celebration to go to for five nights straight last week.
So what's in store for us in the upcoming year? Well… hopefully a lot.
Finishing the basement—Our hope is to get things inspected, then drywalled, then we can start putting the finishing touches on like paint, flooring, and trim. We might do the bar this year, we might not. We also hope to get the projector and all of the equipment so we are actually able to watch movies down there!
Continue working from home—I've been working from home all month now and I think it is going great. I have not had any complaints from anyone yet about it, so hopefully all of my superiors agree.
Keep up the good work—I STILL don't have my morning cough back, and it STILL amazes me. I am officially one month out from my hospital stay and still doing really well. At this point, now I'm really wondering just how much my workplace was making me feel terrible. The past few nights I've woke up coughing, but outside of that I am doing good.
Do my 5K—Along with that, I'm still very hopeful I can do my 5K! Since I bounced back from my sickness and now have been able to hold my own I'm hoping to train in the next 3 months and do it! I looked it up, and last year the person who finished last did it in 1 hour 18 minutes, so I figure that can be a good starting point for me. If I do, I'll let you know so you can all join in cheering me on :)
To resolve or not to resolve? We always start the new year off with good intentions, and then end up falling back into our old ways within two weeks. Everyone wants to work out more, weigh less, etc. However, I'd like to lay out a list of alternatives that could be more achievable.
Silence Your Phone During Dinner—Whether you're dining out or eating at home, just put the thing on silent or set it in another room. Be present and enjoy your meal with the people in the room. It saddens me when I see parents and the kids are left to fend for themselves while mom and dad waste time on their phones. Don't be like those people, at home or out in public.
Limit Your Online Time—Again, we all know how the internet can take over so much of our time. Make a point to stop that right now and limit your time if you spend too much of it online.
Try New Food—Once a month, pick a new specific food or specific restaurant you've never been to.
Donate—Make a donation somewhere, and don't tell anyone about it. Nothing is less charitable than when you make a point of telling your friends that you gave $$ to some cause.
Go to Church—If you don't go at all, try for once a month. If you go once a month, try going weekly. I used to think that going to church would get you into heaven. Then I thought it was silly that people go to church, thinking it will get them into heaven, while living awful, hurtful lives outside of church. Now I understand that church does not get you into heaven, but it enhances your life and, whether you realize it or not, makes you a more holy person.
I went to take the dog outside. But as I stepped over the threshold I paused because I heard this odd sound. It was like a soft sound, like something was going pfft pfft, pfft pfft. I turned my head to look inside and found a bird flying around... in our house.
Josie was already on her way to go potty so I called to Jarrod saying "Jarrod! There's a bird in the house!" Right as I said that, I realized there was another bird fluttering around the porch (possibly its mate) and I shut the door immediately to keep the second one out.
Once we got back inside, I put the dog in her crate so we could open up the front door and the deck door in hopes of getting the bird (it was a house finch) to fly out. Jarrod had closed all the bedroom doors to keep it out of the rooms. Jeff was coming over for a movie later, and he arrived at this point. It was so hilarious trying to get the bird to fly out; we had out a broom and a Swiffer hoping to keep him moving. I set bird seed outside in hopes he would see it and find it enticing.
Sitting atop the dining light.
The bird kept landing on the dining room light, then he'd sit on the ceiling fan in the living room, then go down the hall, then come back to the dining room, then at one point Jeff said "Oh no, he's found a house!" because the bird had landed on top of our cabinets where I have about 8 decorative bird houses, haha. Then he landed ON the corner of the open front door about 3 different times, but somehow didn't see the great outdoors just beyond. I think after chasing him around for about ten minutes. He flew out just as unnoticeably as he came in, though he did leave behind some bird crap on the wall. However he pooped horizontally ont the wall, I'll never know.
For most of the month, every time I'd take the dog out, there would be bits and pieces of greenery from my wreath on the ground, right as you opened the door. I asked Jarrod if he thought he had slammed the door shut a few times, but he didn't think so. I began to believe that some birds were pecking at my wreath, because on more than one occasion I'd see one around the porch. I'd say tonight confirms that suspicion.
We went to see American Hustle tonight. The movie itself was good, but our experience was a tad annoying.
I have yet to talk with someone else who is as picky about movie theaters as me and my husband are. It is so rarely that I even go to a movie theater because I usually end up getting cranky from the whole experience. The things that bother me are things like parents bringing babies or toddlers to PG-13 and above movies, or teens talking during most of the film. Tonight was also bothersome but for other reasons.
For one, when we walked in, there was this god-awful, so-painful-it-was-comical song that a twelve-year-old was singing about bullying (OMG it kept going and going) that went something like "... and then you; can find out; what it means; to be small!"—that's another topic for another time, but really? Are we really to the point where we need pop tunes at movie theaters, written specifically about bullying? Furthermore, does anyone honestly believe crap like this makes kids think "Oh, maybe I shouldn't be mean."? Further furthermore: this is an R movie, almost everyone there was over 25, wrong target audience!
Ok, enough on that tangent. But anyways, there were so many commercials for TV shows and shoes and coats, just like you'd see on TV. Then on top of that there were at least 5 movie previews, which they didn't start on time at 8:20 but at 8:40ish. Which meant our movie had an even later start.
They didn't turn the lights off, they only dimmed them slightly, so it was still too flipping bright in there. I couldn't tell if they even shut the door to the theater because the noise in the hall was distracting. Then you had the rumbles from the theater next door bleeding in to our movie, pretty badly too. The three 50-something women next to me wouldn't stop talking. And the kid in front of us put his feet up on the seats... with no shoes on, just socks. Dude, you're not in your living room.
And this is why I wait till things are available on Netflix and just watch movies in the comfort of my own home where I have no one to bother me except maybe my dog.
I discovered a great website earlier this year called Goodreads. I had signed up for Goodreads a long time ago when it was a younger website, you might say, but left when I found it didn't have many images for books and was overall clunky.
In March of this year, Amazon reached an agreement with the site and acquired it, and right after that I signed up. For someone like me who likes lists, likes visualizations of things, and likes books it is a great site. It helps me keep track of my never-ending list of books I want to read, so next time I'm searching for a book or get a recommendation from a friend I'm not like 'Ugh, what was it again that I was wanting to read? What was that book called?' My tastes in books are all over the board, and since I don't lean to one genre over another it can be tough to choose what to read next without a list.
When I signed up, I then saw they had a "2013 Reading Challenge" and on a whim, I set a goal for myself of 10 books. I'm happy to say I surpassed it, and I'm thinking about what next years goal should be. I started in April this year, so I'm thinking my goal for 2014 might be 14 books. If that's the case, I need to start reading again and quit playing QuizUp :)
As you can see, I had a bit of a 'dog book' trend, haha!
I ran to Walmart and Schnucks tonight to pick up the ingredients needed for my Christmas dessert. Walmart was crazy crowded, but I'm pleased to say that no one was, like, in a panic yet and acting stupid. The worst parts were the parking lot and the checkout line. I was in line and the lady in front of me even offered for me to go in front of her which, considering the state of long lines, was a very generous offer. I declined because I just remembered something I forgot to grab. Schnucks was also extremely crowded and it's been a long time since I've seen their parking lot so full.
I dyed my hair again, but I don't like it as much as the first color. This one is more violet, which means it's a less 'natural' color. It doesn't look bad, but I liked the other one better; Jarrod agreed on that too. No one at work today, when I stopped in, said anything so either they didn't notice or they didn't think it looked good, haha.
My dad and I went shopping the other day at Kohl's. As we were leaving a store associate stopped us right outside the doors and said "Sir, were you over at the far register on the end?" We were, my dad told him with a puzzled look. "Well, congratulations you're our Dream Receipt winner of the day. All of your purchase you made is free and on us." We had to follow him back in, back to the same register, where they put all of his charges back on his card. Ha! How funny. Too bad we hardly bought anything... I think our purchase was less than $30.
Jarrod's been making good progress on the basement recently. His dad helped him break up the concrete floor the other day for plumbing stuff. That meant I spent a night at mom and dad's just in case the large amount of dust escaped from the basement (where they had a fan helping blow it outside) to the upstairs. It was more of a precaution than anything, but I'd rather be safe than sorry. The dog was already at their house, due to the insanely loud noises from the jackhammer, so it wasn't too big a deal.
Around this time, about a week away from Christmas, I really start to get in the spirit. I have been listening to Christmas songs on the TV radio channels for a while now, but I busted out my own collection of songs while I worked today. I might just watch my "Christmas Tape" tonight too.
I have a confession to make: I am really excited for Christmas just like the next person, but I'm even more excited for the following Monday, the 30th. My best friend Marie is coming home for the holiday and we are getting together that day. I have not seen her in over a year, as she lives on the west coast, so it will be a wonderful day.
If you have pets, I'm sure you love them. We all love our pets, and I was never a dog person until I had one of my own. That's not to say I didn't like them, but I wasn't so into them until we got Josie.
I am now a huge advocate of pets for people who are sick, elderly, or lonely. I've seen just how much joy Josie has brought to my life and I know that it has helped my mood even if in just a small way. She's my companion when I'm at home sick or Jarrod is gone, and our guardian, despite her small size and distaste for the neighbors.
But most recently, she's started doing something else that just melts my heart. Almost every night, and sometimes at other treatment times, she will come and lay down next to me while I vest. It is the sweetest thing. I wonder if the shaking of the vest is almost like a massage and it feels good or something. Either way, whether she does it because she wants a massage or because she likes me, it makes me smile; I figure it's a combination of the two. I'm so happy she doesn't mind all of my extra equipment, isn't afraid of it, and is used to it. I know that might sound a little corny, but that's how I look at it. She's a good dog.
This week's article from CNN is about cancer research. This idea sounds revolutionary to me, and if they can do this with killing cancer, what else can they accomplish? How exciting!
When I was a kid, one of my favorite parts of decorating was helping mom put up the nativity scene. My mom has the coolest nativity scene, in my opinion, for two reasons: It's enormous (in scale and amount of pieces), and she made it herself.
Back when ceramics were more popular, my mom painted and glazed her ceramic nativity set. I don't even know how many pieces it has to it, but this is the best picture I've found online of the figurines and she has even more pieces than the 20 shown here.
But putting up the nativity scene was a bit like Christmas itself. All of the pieces are in a box filled with shredded newspaper, each figurine wrapped in tissue paper. So you'd have to dig through the shredded newspaper pieces to find all of the pieces, and then I always enjoyed unwrapping each piece, trying to guess which one it would be. Back at our old house, we would place the manger on the fireplace ledge, hang the angel somewhere near the mantle (with fishing line too, so it looks like it's floating), and place the kings over on the bookshelf since they were 'traveling and not quite there yet'.
Two Christmases ago, Wanda gave me a basic nativity set so I could start my own. The figurines are made by a company called Fontanini, an Italian family who have been making them for a long time as I understand it. And the best part about it? They make numerous figurines, just like my mom's has, so I can add to my set over the years.
As I unwrapped the pieces and put it up this year, I felt the same excitement and anticipation as I did when I was a child. Right now I just have the holy family, a cow, and an angel, but I'm excited to expand it, put it all in one box, and continue the same joy of unwrapping every piece year after year.
Jarrod's teeth extraction went fine yesterday, it was over relatively quickly too. He spent most of the day on the couch or in the recliner, and was in a decent amount of pain when the pain meds wore off nearing the next dose. Today the pain is better, but right now he's not feeling well.
It occurred to me the role reversal, and I found it kind of strange. I'm always the one who needs to be taken care of, and he's always been the caretaker and supporter. Not the other way around. They came and got me and I walked back to the recovery area. He was sitting there, eyes closed, puffy, still waking up from the anesthesia. This is the first time I've been the one sitting with the person waking up, not being the one waking up. It struck me. Jarrod has been blessed to never have needed surgery before now, never been put under, never needed pain meds; he's never experienced any of that, and if you are like him consider yourself fortunate as well. For me, it's all just old hat. I've needed to be put under a few times for various reasons, or even back when I was a kid and used to get a special, long IV catheter, they would give me a little Versed to relax me and make me sleepy.
So I took care of him yesterday, and am insisting on him getting plenty of rest today too. They said the more rest you get now, the better everything will be later.
It's raining now, and the weather is supposed to be nasty today with mixes of rain, sleet, and snow. So it's a good day to stay inside, chill out, watch Mad Men, and sleep.
Jarrod gets his wisdom teeth out tomorrow, wish him well. His teeth are pretty sensitive, so any kind of teeth/mouth pain is awful.
I've stocked up on what I would call the "essentials" for us (mostly him) for the next few days as he heals. I've got plenty of Jello, a tub of ice cream, some yogurts, and ramen noodles for when he wants to try chewing a little. I figure we might make a couple trips to Orange Leaf somewhere in there too.
In other news, I'd like to take this moment to tell you how GREAT I feel! Still! Even 15 days after coming home from the hospital, I still am feeling awesome. I don't cough much, I still don't have my morning cough back which is nuts, and I haven't needed my oxygen much. So woo hoo and here's to more days of the same!
I have started decorating the house a little, and I'm excited to do that. After a last minute decision, Jarrod and I are not putting up our big Christmas tree this year. It would be too crowded. With my fancy schmancy treadmill in the front room, there is not much room left to place a tree. Next Christmas, the treadmill will be where it is 'supposed' to be in the basement, but seeing as that's under construction now, it must remain upstairs. Instead we are using this small tree I've had for almost 20 years; it was my Christmas tree in college too, haha.
Ah, the Melton tree, standing a proud 18" tall.
But outside of decorating, I'm not really anxious for all of the other obligatory Christmas tasks. I have started doing some light shopping, but I just can't get into it. And today's incident didn't help that at all...
I went to JCP to get Jarrod a dress shirt and tie. I thought it was on sale for $15, but when she rang up my shirt and tie, it didn't add up. I started to protest right before I was set to sign the receipt screen, and I asked her how much things were. She replied, in the most unhelpful, unenthusiastic tone you can think of "I can't see what it is until you sign it." I should have protested further that I wasn't buying it until I knew what it cost, but whatever. I signed and then she showed me the receipt. I questioned the price, she (again, so unhappily) called back to check the price and said only the Stafford shirts were on sale. I still wasn't convinced, so we walked back to check, which was all the way in the back, opposite corner of the store; that just added to the frustration.
I was wrong, what she told me was correct, but we saw that the shirt I did buy was Buy 1 Get 1 Free. And that lady at the counter never even told me... I know there would have been something that came on her screen showing that, but she never said it. So, I wanted my free shirt damnit! I picked out a new one and headed back to the front, and luckily didn't have to endure her again. I explained the mixup and the guy just rang me up a shirt for no charge. I thanked him and we were on our way.
But it put me in such a bad mood that stuck with me for a while. Needless to say, I'm not super anxious to go back out shopping.
Alright folks, I promise (outside of this paragraph) this blog will not have anything to do with my health. Now that I'm out of the woods and doing well, mostly back to normal, I think I need to take a break from talking about it. CF does not define who I am, and I don't want it to be the only thing I blog about either.
So, how about all that snow we were supposed to get? Maybe it's still coming tonight, but at this point I'm doubtful. I bet those schools who cancelled already this morning or who let out early this afternoon, which was most of the public schools in our area, are feeling pretty darn stupid.
Which brings me to my rant: Is it just me or are the schools getting wimpier and wimpier with winter? It seems at just the mention of snow, schools are calling the day off. Really?! We all know how unreliable weather forecasters can be, and their incredibly poor track record, especially when it comes to snow and ice. Good gracious, how on earth did we ever get anywhere "back then" if it snowed? These days no matter the amount of snow, the weather people are calling for everyone to stay inside and don't, I repeat DON'T, at all costs, venture out in this stuff.
I like to stay informed on the weather, which proves difficult because in order to actually hear the forecast I have to also put up with their ridiculous amount of winter weather coverage, which I have written about before here. I wrote that blog two years ago, and yep, it's still the same; maybe a little worse. So I blame the news channels for consistently blowing things out of proportion. Supposedly today we were expecting much snow and ice, and conditions would be drastically worsening as the afternoon wore on. Let me tell you about how that's going...
I can see maybe 1 one-hundredth of an inch of frozen anything on my deck, and that's my deck—which will always be colder and quicker to freeze than a road. I have yet to see a snowflake as well. Maybe the southern part of the state is seeing snow, but still. Ok, I just looked out the front door and there is indeed snow falling. But there is no need to freak the entire area out when it only applies to a tiny portion of said area. Sheesh...
In honor of Giving Tuesday I felt this might be appropriate. If you are feeling charitable or simply feeling like "Man, I wish I could help Jamie" let me tell you that there are a few things you can do.
The first is consider a donation to the CF Foundation. They are a truly wonderful organization and it is safe to say that without the work they do, I would not be here. The CFF is highly involved in research for us, and a huge portion of dollars raised goes straight towards it. Together with drug companies, they have helped with many clinical trials to develop drugs that have kept me and many others going. You can view the "Pipeline" on their website too, to see what is currently in development. And let me tell you how exciting that is...
Last year, a drug called Kalydeco was approved for treating 4% of the CF population because only a small percentage had that gene mutation. It was a monumental achievement because this drug targets the exact gene, the exact root of the problem of CF, and corrects a stop codon to form a protein (again, in the gene) so the gene acts as though it does not have CF. Amazing, right? It was quite revolutionary because it opens up an entirely new world of ideas for treating many other diseases. It was also very, very quick to make it through the approval process; from the time it was submitted to the FDA and approved was a short 4ish months due to the overwhelming success it had and need of it. Anyways, they are currently studying a similar drug for a different gene type, which I have one copy of. They are in Phase 3 right now with people with two copies of the gene, and the next stop is FDA approval. So, hypothetically, in two or three years, it is very possible that this drug will be approved if all goes according to plan. It would be the closest thing we have to a cure. And it is also very possible that I could start taking this drug and gain back a bit of lung function while also almost grinding my CF to a halt (almost.) That wouldn't mean my lungs would miraculously be normal again, but it would slow the decline by a LOT and push off the transplant possibility for a while. Again, that would be a-mazing in the truest sense of the word. Ergo, donations are a great way to help out.
Another is to consider becoming an organ donor. You can help many people by becoming one. I know it's a big choice, but being a person who will most likely be the recipient of one, the cause is becoming closer to my heart. Plus then you get a cool little heart on your license ;).
The last way to help is just prayers and support. But that probably goes without saying :).
I am almost back to my baseline, almost back to my best numbers as of late which happened back in September. God is so good, I am so glad I have started to inch my way back up. I could feel it, I thought I was doing better and it's nice to see on paper that I'm not imagining things.
But there is something interesting to note. I never would have noticed this until I started charting my progress at home, but the values each hospital uses to determine that percentage are different. So for a person of my height and weight, the figure would be 33% at Mizzou, 35.5% at Mercy, and 35.2% at Barnes. Isn't that weird, and kinda dumb? Shouldn't there be a standard across the board so it is the same no matter where you go? Turns out there isn't, and I guess it just depends on the software and the computer doing the testing. So that's why we can't truly just go by the percentage. It is best to look at the raw data and compare it. Therefore, even when I compare the raw numbers I am just .07 liters away from my best numbers. I can do it!
In other news, Jarrod and I have been talking like Batman tonight and I really wish I could record Jarrod, he's pretty good at it. Have you seen the Batdad videos? This dad gives short tidbits of parenting advice with the ridiculous Batman voice and it's hilarious; something like "BEN! Be sure to brush your gums. You don't want... gingivitis." I mean, I loved Christopher Nolan's Dark Knight movies, but Christian Bale's cover-up voice for Batman just got more and more deep, raspy, and silly as time went on. So after a joke I made, we've been talking in Batman sentences this evening. Try it, it's really funny. You might want to put up the... Christmas lights tonight. It's going to get... cold. (Look up the video and that might make a bit more sense.)
I have my PFT tomorrow bright and early. I'm really hopeful about it right now! I just finished a really great walk on the treadmill, and I almost made it for 30 minutes. I had to stop at 27 because I couldn't catch my breath. But I alternated between 5 minutes of slow walking and 5 minutes of fast walking, and right now I feel really good. I don't know why I've never thought of that before, but I ran it past Jarrod, and he agreed it would be something good to try.
I've been just pleading with God that my test tomorrow will be better than last Monday's, that's all I ask. It doesn't have to be back to where I was in August, just a couple points better so I know that I've made a little progress since I've been home.
Right now I'm doing my treatment and preparing for bed. I am quite tired, but hopefully that means I'll fall asleep quickly.
We had Jarrod's family and my family over tonight for a late Thanksgiving, since we didn't get to see any of them actually on Thursday. It was really nice and so great to talk with everyone and see everyone. We don't get to see Jarrod's siblings nearly enough, and even though we were down one brother, it was really nice.
I am starting a new recurring Friday/Saturday post that will feature an article that I've found this week that, well, I just really wanted to pass along to everyone! Topics range, but sometimes there are some great things that I want to share.
Today's first selection is from a fellow CF girl. She writes about flu shots and instead of writing a nearly-identical post, I thought I'd just point you to her great words about why you should get a flu shot.
Well, yesterday morning we went to church and as I mentioned in the last post, Cardinal Dolan said mass.
I had decided I wanted to go partially in the hopes of saying "Hi, I'm Jamie! I'm the one you've been praying for. Thank you!" or something of the sort. After mass, we met up with mom and dad. Mom had already spoke with him before mass and he said he wanted to meet me.
After mass, he was in the northax holding a baby, his great-nephew. The usual group of people was edging their way through to say hello, shake his hand, or speak to him. We slowly shuffled our way closer and finally he saw my mom, who he recognized from earlier obviously.
She told him I was Jamie, her daughter, and he immediately pulled me into him into a hug saying he had been praying so much for me. He put his hand around me and prayed over me, keeping me close to him, and then said something in Latin as he drew a cross on my forehead. I just kept thanking him. Then he was saying how he had read something about lung transplants just in the paper this morning, and he said "I understand you will be needing one sometime?" and asked where I would do that. I said here in St. Louis and again thanked him so much for his prayers, and I'm pretty sure he said he would continue to do so. Honestly the end is a little blurry. And with that, we moved on so the next person could speak with him.
Image from The Missourian, emissourian.com.
My mom was in tears, somehow I didn't fully cry, but wow! And the image Jeanne at work (the newspaper) took just truly captures the moment. What a special morning to start Thanksgiving with. I wish I knew what he said in his Latin blessing, but I'm not sure and so far my online search hasn't come up with much. The gospel about healing the leaper was quite appropriate for me, the homily Cardinal Dolan gave about gratitude and being grateful instead of entitled was great, and then to receive that blessing afterwards was a great start to the day.
It reminded me how much I'd really like to start almost every day by going to church. I'm hoping I can work that in, in the coming months as I have to change up my whole schedule. Maybe I'll start working at 9am so I can go to weekday mass on the days that I feel up to it. How wonderful would that be?
I've been told that this double holiday will not happen for another 70,000 years? That's a long time.
I hope everyone enjoys their Thanksgiving. I will be starting mine with mass with Cardinal Dolan. When he flies home for the holidays, sometimes he will say mass at my parish which is, obviously, a special treat. Last time he pulled up across from me, with his mom as his passenger, Yankees hat on head, not much before mass, joking and talking with people on his way in.
Despite all of my changes, there is still plenty to be thankful for this year and a lot that is staying the same. I still have my house, I'm not moving. That's something to be thankful for. But instead of running down the usual thankful list, I thought I'd just write a list of updates and stories since my last post.
1. As my mom pointed out, she's not sure this was indeed my fourth time in the hospital this year. And now I'm not so sure either. So maybe it's just three; the lesser the better.
2. I am on oxygen at home now, but just as needed. I got all the stuff yesterday and we rolled it all into the bedroom last night. I slept with it on last night because my % was low when I checked it right before bed. The machine is noisy, as in it is not silent, but we like background noise when we sleep so getting used to it shouldn't be too bad.
2B. We are calling it my Darth Vader machine because it has a general constant noise/hum, while another noise of pulling in air, then 'exhaling' if you will. So it's a bit like Darth.
2C. Oh, and it came with a No Smoking sign that we are supposed to post in the window. How funny is that? Although, apparently it's for firefighters to know too, so in that case we can post it.
3. I accidentally went to Applebee's the other night in slippers. I got out of the car, realized I was still in my slippers that I always wear, and just laughed and laughed. They have a solid sole and look enough like a fuzzy sweater moccasin to pass as shoes, so we just went inside. I was happy we were in a booth, though, and my feet could stay fairly hidden. Oops.
4. I'm super happy to see Josie again. I missed Jarrod, but I got to visit with him off and on the two weeks I was there. But my dog got no such visits with me, so I was happy to have her home. We laid in the sun together yesterday, which might be her fourth favorite thing to do after eating, playing ball, and rough-housing with guys (she won't play like that with me, but does with Jarrod and almost any other male.)
This past week has been a bit rocky. My hospital stay has been going relatively well. My PFT on Monday was decent enough, showing we were heading in the right direction at least. I will do another PFT tomorrow to see if we're back where we need to be, or if we need to continue meds. I'm really, really hoping for the first of those two options.
But there are some things to note about this hospital stay. First of all, this is the fourth time I've been in this year. Count 'em: 4. That's a new record for me, and not one that I'm very excited about. I also got insulin for the first time last week. I've gotten insulin 3 or 4 times now, while I've been here. They are checking my sugars before every meal and in the evening, which makes for four finger pricks every day. And let me tell you, my fingers are pretty bruised and showing signs of wear. My sugars were fairly erratic; sometimes they were within normal range, and the worst was when they were 348. So they are now having me take a pill that will help regulate my sugars while I'm still in the "pre-diabetes/not-quite-yet-full-blown-diabetes" phase.
But on Tuesday, I was delivered some major news from my doctor. She told me that she wanted me to contact the transplant team at the big hospital so I could be evaluated.
At first I didn't really react much to that news. But by that evening, I was spiraling into a black hole that had been ripped open in my world.
The "T-word" is something that has always been in my vocab. It's something we CFers always know is a possibility. Since the 1980s, double lung transplants have not only been possible, their rate of success continues to increase with people living over 5 years post-transplant or receiving second lung transplants. But suddenly something very abstract became very real. Transplant? Already? No, it's not time for that. I'm still fairly okay. I'm not even on oxygen. I still have so much I want to do!
After a couple solid days of being down and out and quite upset about it all, it finally percolated through and I was able to process the news. No, I don't need a transplant right now. No, my life is not over. I may not need one for a few more years, who knows, but the sad truth is that CF has significantly taken over my lungs and it's time to start planning for that day whenever it comes.
Now that I'm in a better place mentally, I can honestly say that I want to talk with the transplant team. I want to find out now, well in advance, what I need to do to put myself in the best position possible for receiving new lungs. I want to start now, years before it's time, so that my chances of success are as perfect as they can be.
But this is going to involve a lot of change, which is another reason why I think this news was so difficult to digest. With my previous doctors, we were just going along, acting like I'm fine when I'm not, and if I was still with them, this is not something they would have said. My new doctor, who is amazing I must tell you, is much more proactive, much more on top of things, and much more concerned about me, not in a dire way but in a genuine "I really want the best for you and I will make myself sick if I don't help you as best as I can" kind of way. And I think it's good to have someone on your team like that.
So she is genuinely concerned that my lungs are at a turning point, and not the good kind. She is afraid that lung infections and hospital stays 4 times a year (or more) will become my norm and therefore it is time to start talking about the next step: transplant.
I backtracked through a lot of blog posts of a fellow CF girl whose blog I follow. She had over two years between the time when her doctors referred her and when she received new lungs. So it's reassuring to know that this is more of the norm. Just to explain things a little bit: usually you start talking with a transplant team well in advance. You will talk with the transplant team about the requirements, post-transplant expectations, and lots of other stuff. You will be "evaluated" which means you undergo many tests to see the state of your body. Fortunately, I don't have any other diseases or complications outside of my CF, so that's a positive. After that, and depending on many other things I don't know about yet, you decide when it's time to be "listed" which means you officially go on the transplant list for new organs when they are available. So me being evaluated now does not mean I will be listed any time in the near future, and hopefully it stays that way. But in a nutshell, that is the general course of events.
But it is still just hard, and I know that no one is going to hold that against me. I have been praying about it, and trying to talk to God about it, but it's been hard. I have tried to repeat "Not my will , but thy will be done", but it's hard. Truly, fully, undoubtedly putting your life in God's hands is hard. And I have learned that I am not where I need to be in putting my trust in God. But I guess you could say this entire journey I'm starting on might help me with that.
The good part is I have a great support team, God's workers on earth, and that can only be viewed as a blessing. The nurses and therapists here were very helpful too, as I struggled this past week. My nurse sat with me one evening and offered to call my priest at my home parish. And during one of my treatments when I was crying, my therapist (who is a wonderful girl from Cameroon, Africa) started to sing to me. My parents are supportive and involved in my care and will continue to be with me every step of the way. The same can be said for Jarrod's parents. My friends are pretty fantastic too. My dog Josie will be licking my face when I'm sad. And lastly there is Jarrod, the man God knew I needed for times just like this, "...in sickness and in health." He has been so wonderful through all of this and I know he will be at my side as we begin this new journey into the unknown.
My aforementioned nurse told me to look up this song by Mandisa. It's pretty great, and the video is touching (but if you're like me and music makes you cry [theme from the movie Up? Anyone?] then maybe grab one more tissue to get through this song haha!)
PS—To my two best friends M.C. and H.N.J. please know I wanted to talk to you about this, but you could say I am still getting through the news, even though I am doing much better with it. So to my two friends, please forgive me that this is how you will find out about this, but right now it is the easiest for me to write about it. It's not a 'fun' conversation to have, so please know that I was not wanting to withhold this from you. :)
I haven't done much since I've been here, and haven't even really felt up to blogging much. I watch a lot of TV and I realized I have a schedule:
From 7:00-10:00am, I watch the Today Show.
10:00-11:00am - The Price Is Right
11:00am-12:00pm - Tom and Jerry or the Food Network
12:00-2:00pm - varies, but I'm probably napping
2:00-3:00pm - Food Network
3:00-4:00pm - Friends
4:00-5:00pm - Jeopardy
5:00-5:30pm - local news or Seinfeld
5:30-6:00pm - Nightly News with Brian Williams
6:00-6:30pm - Seinfeld
6:30-7:00pm - Wheel of Fortune
7:00-10:00pm - varies
10:00-10:30pm - Jon Stewart
10:30-11:00pm - Stephen Colbert
11:00-11:35pm - Jay Leno or David Letterman
11:35 until I fall asleep, Jimmy Fallon
Just for a quick update: I am still in the hospital. It could not be avoided. My condition last Sunday into Monday continued to go downhill. It all happened so fast, and I've been here for over a week now, and I might be for another week or so.
There are a lot of people praying for me, and they reach almost all corners of the USA. From my best friend in Seattle, down to Texas, up to Michigan, down to Florida, and over to New York, it becomes overwhelming to think of all of the love and support from so many. My mom works with the niece of a certain archbishop, and upon learning that I was back in the hospital, unbeknownst to mom, she called her uncle. And then what do you know... my mom got a call from "Unknown" and then a voicemail from Cardinal Dolan. He told her that his neice told him about me and that he is praying for me and sending love, support, and prayers. Wow, how awesome that he took the time out of his day to call my mom. I know it meant a lot to her, and I think it's very touching, too. She also got a card from him in the mail this week too.
Saturday we were supposed to go to the Mizzou vs. Ole Miss football game in Mississippi. Well, obviously we won't be anymore. Even if I got out in time, it just wouldn't be something we could swing. So I told Jarrod we need to throw a party here and deck my room out in Ole Miss red and blue. I think it would be funny, although I realize not everyone here might find it as funny since we're rooting against Mizzou on Mizzou turf. So we'll see, but we'll at least be watching the game.
I don't usually do this, but please pray for me. I have been coughing non-stop since 9:00 last night. Aside from my nap I somehow got to take, my hours have been filled with nothing but coughs.
Also if our next round of oral meds does not do the trick I will be back in the hospital and I'm just not ready for that again so soon.
Maybe you haven't kept up on their doings like I have, but JCP has been having a really hard time of "finding itself" lately. A while back, they announced an entirely new strategy of true, honest pricing. This meant no sales, the price would be what it should be, not what it actually should be once they inflate it and you take 25% off in our Sale of the Season. At first, I thought it sounded great. The way they pitched it made sense.
But as time went on, I and many others weren't going into their stores as often. Turns out old habits die hard and shopping is all mental (which, shouldn't we already know this?) You feel like you've been successful and found a bargain when you present that coupon, or see that 20% off sign, or whatever the sale might be. You feel better about your purchase and I'm sure many people find it more justifiable. When you take that element out, like they did, a ten-dollar shirt is just a ten-dollar shirt. It sounds much better when you say "I got an 18-dollar shirt on sale for ten dollars."
So in recent months, seeing that their stock was tanking and their sales plummeting, they fired their CEO, found a new one, and are now back to their old ways. They even ran a large ad campaign about the changes they'd made, "some you liked, some you didn't", practically begging people to give them another shot. I'm on their email list and I got emails saying the same thing, practically with puppy dog eyes crying "Pwease come baaaaaccckkkk!"
Now, the entire reason I thought of writing this is because I just shopped there last Sunday and wanted to share something.
I bought two items: a bra and a pair of jeans. I noticed that both had price tag stickers on them that were clearly covering up a previous price. The bra was $38, but after I peeled it back I saw that the previous one (as in, no-sales-true-pricing-days) was $25. Whoa... that is quite a jump up. For the pair of jeans, the price was $34, but they were on sale for $19.99. I peeled up the sticker on the jeans too and found they used to be $27.
So if we compare...
True Price Model:
$25 + $27 = $52
Sunday's 'old pricing' structure:
$38 + $34 = $72
...with sales: $38 + $20 = $58
But... I had a 25% off coupon which brought my total down to $43.
You can make your own judgments on that, but I like that we're back to the old way. I'm sure they still made a profit on my purchase Sunday, and I felt better about it because I had a one-day only coupon. I wasn't the only one either, there was a line of probably 15 people at the checkout, all with coupons; you would have thought it was Christmas.
I don't mind Walmart too much, really, but probably the worst part of any shopping trip is the checkout line. Tonight, I spent over 20 minutes waiting to be checked out; that is way too long of a wait in my book.
It was prime shopping time, when everyone is getting off work, and they only had three lines open that could handle more than 20 items. I was surprised honestly, because usually this is something Target pulls, when 80% of the time there is one, count them one!, checkout line open. I guess they had someone call in or not show. Needless to say, the lines in these three available registers were quite long. After I was already trapped within the 'aisle of impulse' another line opened up, but even four lines was not enough.
On top of the cashier shortage, all of the customers in front of me paid by check. Oh goodie... Which meant they had to write it out, scan it through the printer thing, ask for their phone number, ask for their driver's license so they can write it on there (I've never understood why that's necessary, in no way would I want all that info just floating out there.) Then the lady's machine wouldn't beep anymore when she scanned an item. She got 1/4 of the way through the stuff of the people in front of me before she realized she rang up some of their items twice. So she had to cancel that, redo it, and then proceed. She also had to count out cash back to them, which took longer than it should have. I happened to meet eyes with the older man and he smiled, which made me smile, and then he emulated a sigh, and we shared a 'Jeez this is taking forever but we're trying to stay happy' kind of expression. It made me chuckle inside, and for a moment took me out of my disdain for the whole process.
Then it was finally my turn, and all in all I spent 24 minutes total between the time I hopped in line to the time I walked out of it. The only good thing going for this entire trip was the lady was good at bagging groceries and I didn't come home with a surplus of bags; for some reason, I am not capable of remembering my collection of reusable bags I stash in my car.
I guess I should just be thankful I didn't get stuck behind someone with a bunch of circulars ready to argue and price match everything in the cart.
Thanks to a passionate group effort, another station has begun in it's place. Announced earlier in April this year, it has a small frequency range and unfortunately I live outside of it. But I had the idea today to check online to see A, if it was up and running yet, and B, if they had a way to listen online.
Yes and yes! I bookmarked the link and listened all day long at work.
Pandora does not have enough variety and most other online stations I tried out are too Baroque (Cue joke from Cogsworth...) So far this has been an awesome blend and I'm looking forward to more. I am so ecstatic to find back a good variety of classical music. And I am so happy to hear some of the same DJs that were on the previous station. Tom Sudholt would ease me into my workday as I drove, and it's good to hear his voice and wonderful choice of songs again. Plus, I mean talk about beautiful and calming music (mostly, unless it's like, Night on Bald Mountain [but that might be perfect for today since it's Halloween!])
Side story: I was right the other day about our trash: the deck chair that broke during our move out here was gone before the trash man even came. They left the cushion though, haha.
The Cardinals certainly didn't display why they're a worthy contender for the World Series; last night was pretty rough.
I canNOT watch the local news when it is post-season Cardinals baseball. They're never-ending live reports down near the stadium and about everything baseball make my head hurt from their stupidity. Every... single... day... the news starts out something like this:
News Desk Girl: "And now we're gonna go down to the stadium where Bob has been most of the afternoon. Cardinals fans are lining up showing their Cardinal Red and they are pumped for the game. Bob?"
Bob: "Yes, I'm down here..."
Errant fan: "WOOOOOOO!!!!!"
Bob: "...and everyone predicts a win for tonight (as if anyone here would say differently). The crowds are here, the fans are pumped, and we are READY TO GO!"
*cut to recorded clip of fan #1*
Fan #1 (an older lady dressed in a red wig or bobbly-springy things waving on a headband, wearing beads and other gaudy attire): "Oh we're going to win. My cat Shelby was out chasing a Cardinal today, so I know we're going to win!"
Fan #2 (a young guy with painted face, sunglasses, who has clearly already had a few drinks and yells his interview): "YEAH! We're gonna beat the Sox tonight, me and my buddies came down here and we are ready for the game."
This is then followed by a variety of reports that could include: Beer sales, how many hot dogs the ballpark makes, a live cast with the sports reporter on the field and nothing happening, live shots of feet walking to the stadium, something about Fredbird, or cutting the grass in the outfield.
Ugh...
I can't take it. I change the channel with such vigor you'd think a horror movie was coming on. It's almost as bad as the ridiculous snow-coverage that happens every winter too.
I still maintain I could get all of my news from the radio and I wouldn't be the least bit unhappy. At least I don't have to put up with the silly canned imagery.
Today has been a bunch of ups and downs. Right now, I'm in a down.
I'm doing my third treatment right now because today has been a really rough day as far as coughing goes. I emailed my docs and for starts, the nurse told me to increase my treatments. I'm still waiting to officially hear from the doctor, but my cough has slowly increased over the last week and this morning was pretty awful. This evening has been awful too, but I have a theory on that one.
In other news, I had to report for jury duty selection today. I know I am not a dumb person, but I just could not get over how confusing the entire process is to GET a juror to the actual place for jury duty. There is so much room for error and confusion, let me explain...
I received a letter in the mail stating I had been selected, filled out a survey portion, and returned that part. I was to keep the paper and call the phone number listed on the Sunday after 5 p.m. the night before I was to appear. The paper said if I got a recording stating I didn't have to come, then I didn't have to come. If there was no recording, that meant I had to show up. I called last night, and I got a recording which said I had to show up unless I received a postcard saying I didn't have to show up. Yeah...
Anyways, they were looking to fill a grand jury, not one for a criminal case. A grand jury decides to indict people, if there is enough evidence to bring the case to trial. I was not picked, though honestly I wouldn't have minded. That sounds interesting, and much less stress than actually convicting someone. My theory on the mega-cough evening is because I sat between #22, who smelled like a smoker, and #24, who had on strong perfume.
I was struck by how random a jury really is. And I think that's kind of cool, having people from multiple walks of life. This observation happens to me a lot when stuck in 'waiting times' with people; airports, doctor's waiting rooms, a group of people for a jury. You always have the one lady who is talkative, and thinks she knows how this 'should' all go. You have your cranky people, your upbeat people. Many were in business-casual attire, while others were more casual. One man in jeans and muddy boots said he did not want to be there because he was a dairy farmer and this was right when he needed to be milking his cows. One of my coworkers was there too, oddly enough. Anyways, we'll see if I get another postcard in the mail. I'm "on call" for a while.
As I sit here doing my vest, I am hearing numerous trucks rumble down our road from time to time. Yep, it's big trash week. Big trash week is borderline-hilarious here. Last year I came upon an old truck with a plaid couch in the bed of it, and two guys just chillin' on the couch like they were watching TV. As a child, me and my neighbor friends used to stage ourselves in the windows to count how many trucks drove by to pick up everyone's junk. If I remember correctly, usually we'd see between 7-10.
And clearly, things never change as people are still driving down my road tonight, in hopes of finding an abandoned, unwanted, dirty old piece of furniture. We have a broken chair we need to donate to the cause, but it won't be out there until tomorrow morning. However, I wouldn't be surprised if it's gone before the trash man actually gets here around noon, haha.
Today I am finally baking my bread that I said I would do a couple months ago. Weekend after weekend would come and go, and I just never had a good portion of my day to set aside for it. Well, today is finally that day. And I'm not talking about using a bread quick mix, or using a bread-making machine, I truly mean from scratch (flour, salt, sugar, shortening) and working the dough like a pioneer.
I had decided to go simple for my first time and do a classic white bread, and it started out pretty good. I got to use my dough hook in my mixer for the first time! I was just hoping for the best, since so many little things can go wrong and have a negative affect on the bread: not enough flour, too much flour, didn't rise enough, the water wasn't warm enough, didn't knead the dough enough, temperature was too cold during rising, temperature was too warm during rising.
My dough mixture was fairly 'doughy' and it was time to knead it. Funny enough, at that exact moment Andrew Bird's song "If I Needed You" was playing. Which, audibly, sounds like "If you kneaded me..." so it was like my bread had picked out the song just for me, haha!
Coming Soon: Deliciousness
I put the dough in the front room, since those face south and were the only ones with sunlight coming through. It looked a little silly, this shiny metal bowl sitting on the floor, but hey you gotta do what you gotta do. I figured the house was a little too cool, so if the dough was in sunlight it would be warm enough. After it rose in the big bowl, I then rolled it out and formed my two loaves. I put both of the bread pans back in the front room, on the windowsill, but by then the sunlight was moving and wasn't streaming in so much anymore. After another bit of rising it was time to bake.
Introduce part one of the rewards of bread-making: the lovely kitchen smell. The house still smells great. They baked for about 30 minutes, then it was time to cool. I set them on my wire racks for a while, then I couldn't wait any longer. I had to dig in!
I cut off a piece, and by all appearances it looked pretty okay; not too holey, not too dry, crust seemed fine. Then I took a bite and...
Oh. My. Goodness.
It was SO good. It was moist, soft, and still warm. I was grinning from ear to ear for the next half hour because I was just so happy that it turned out well! I exclaimed to Jarrod "I have made BREAD!"
The car had a dead battery, and unfortunately we couldn't hook up the new one because the pins don't match size with the connectors to my car. My Cobalt has quite possibly the most awkward battery in the history of cars. First of all, it is in the trunk. Secondly, the way it is strapped down and sits so close to the edge of a piece of plastic is extremely cumbersome.
I really hope they sold me the correct battery, but Jarrod was questioning it when I called him with the update. See, he is hunting this weekend so dad had to come help me with it tonight. By all accounts, it looked the same as the old one, but who knows. We left with the battery five minutes before the auto store closed, so by the time my dad was hooking it up, they were closed. Jarrod is going to come home early from deer camp tomorrow to figure it out.
Of course this happens while he is gone, it could have been worse, though; I could have been out and about and stranded versus just stranded at home. But I have to tell you being stranded is a strange feeling, having no way to get anywhere if I want to or need to. Nothing is within walking distance (well, it kind of is, but it's lots of hills and not doable for me) but fortunately I have loved ones close by that I can call. Mom and dad are picking me up for church in the morning, too.
In other news, I dyed my hair last night! I am really happy with it. The color was called "Auburn Black" and it looks good. It's not that different, which is what I wanted; I didn't want an enormous change. Let me tell you, dying my hair with it being so short is so much easier than when I did it in high school and it was down to my shoulders haha. You don't have to pile it on your head or worry about it much, and I barely needed half of the bottle. Woo hoo!
I had two crazy ideas today. I them past Jarrod and he's cool with both of them.
I want to dye my hair again. I'm thinking a brown-red/burgundy color. I did highlights/lowlights like that 6ish years ago, but you could hardly see them. With my short hair like it is now, it won't take long for it to grow back out if I don't care for it. Hair is hair, I don't really care.
I want to do a 5K. As I've gotten older, I've wanted to be able to run. I'm one of those weirdos who actually enjoys it. The problem is I'm not very good at it, and my airways and muscles can't keep up. But! Since I've started walking 5 times a week, I can already feel a difference with that, so I don't think a 5K is completely out of the question. I was thinking of a half-marathon, but those can be a struggle for even a healthy person, so scratch that. Jarrod suggested a 5K, and I think a 5K is more reasonable, and I'd still be super proud if I accomplished that!!! I'll need to take it one day at a time, and keep things in perspective, but you never know until you try, eh? The Go! St. Louis marathon weekend is in April, and as part of that, they offer a 5K run/walk. If you're unsure, 5 kilometers is 3.1 miles. So, I have about 20 weeks to be able to run/walk 3.1 miles in less than an hour. They offered a training schedule on their website that lasts 9 weeks. So I'm going to start there and modify it out to fit my needs. I know this is going to take a lot of hard work, a lot of discipline, and commitment; I don't have the best track record with things like this. But I really want to do this. It would be one of those "impossible" things!
Sometimes I can be a 'go-getter'. If I see a process that could so obviously be improved to be more efficient, I'll take it upon myself to improve it. And sometimes when I see things that need to be done, and no one's doing them, I will take charge.
So I took it upon myself last week to make myself the Self-Appointed Fridge Nazi at work. The last time anyone cared to clean out the fridge was in 2011. And as I recall, they didn't take much out of it. The people at my work leave so much stuff in the fridge. From salad dressings, to salsas, to water bottles, it got so bad that there was no room left for me to place my lunch and some days it was hard to close the fridge door.
I got so fed up with it I decided to do something about it...
So last week I put a sign on the fridge telling people it would be cleaned out today and that ANYTHING left in there would be thrown out. The first day, there was a small surge in people taking things home. After that, it didn't look much better. Today rolled around and there was still tons of stuff in there, so I highlighted the words on the sign to reinforce the fact that 'Hey, it doesn't matter what kind of container you have, or what it is, it's goin' in the bin!'
I got to work and started pulling out everything in there. I think I threw away 90% of what was in there. I filled up a large 60 gallon trash can about 75% of the way. Some notes:
I brought home 25 water & soda bottles to recycle—that's ridiculous.
The award for Oldest Item goes to: an opened bottle of Diet Mountain Dew, expired in February of 2011.
The 2nd Place award for Grossest Item goes to: a tub of some sort of soup or potatoes from Dierberg's Kitchens that was growing both green and white molds.
The award for Grossest Item goes to: what I think were green grapes??? They had decayed so much that all that remained was a bright green liquid (in a bag, thank god) and some sort of yellow-green mush. I took a photo of it, but I'll spare you. I find it 200% more revolting looking at it now than I did when I pulled it out of there.
So where does this reflection come in? Well, I realized that there was enough food in the trashcan when I was done that we could have made a serious dent at a food pantry, had that all been donated when it was new. I'm not the best at not wasting food, but today's escapade made me realize again just how much food we all waste in our very-blessed lives. It's something I need to work on: making sure that the food I buy and consume does not go to waste.
First she has that infection a couple weeks ago, then something else going on this week. It's always an adventure with our little dog...
Last night after we got home I noticed her eyelid seemed kind of pink. In looking closer, I saw it was quite swollen, and her other eye was starting to turn the same way. I also felt a bump under her chin which was never there before.
We petted her and watched her for the next 20 minutes, when then her lips and the area around her nose started to swell too. Something was up, and we had no idea what it could be. After a quick careful search online (I say 'careful' because diagnosing your dog online is almost as slipper-sloped as self-diagnosing with WebMD) it sounded a lot like an allergic reaction. To what, we had no idea. She spent some time outside, but other than that she didn't get into anything weird.
Since it kept getting worse, I finally called the after-hours line at our vet and the lady said it definitely sounded like an allergic reaction, and I could give her half a tab of Benedryl. By the time I put her to bed, it was getting better.
This morning she looked back to normal and acted fine too. At lunchtime she was acting fine, but once I came home for the day at 3:30, no more than two minutes after I came in the door, she threw up her entire breakfast plus some. Okay, something was still wrong...
She went to the vet again and this is all just part of an allergic reaction. Similar to the way some people feel when they are stung by a wasp (nausea or headaches) she is having symptoms of an allergic reaction. So bland food and Benedryl it is for a few days. She loves this canned chicken and rice food they give you for upset doggy stomachs. She goes nuts for that stuff; for bland food, it sure must taste pretty darn good.
I figured I might as well give you the small update regarding my blood tests I got back last week. In case anyone was wondering...
We met with the diabetes doctor today, and in short: I don't have diabetes right now, but I might in about a year. So it's good news/bad news: good news is obviously I don't have it right now and we don't need to change anything or treat anything yet, bad news is I'm well on my way. At the same time, this is not all that surprising; it is well known that the older a person with CF is, the more at risk they are for having CF-related diabetes.
Then after that I met with my lung doctor (who I'm still loving!) and it was good news all around. My weight is coming back up, my lungs were even slightly better than last time, and they sounded pretty good.
I also got a new nebulizer compressor (the machine that puts out the air). I have never been so excited for a piece of medical equipment in my life, haha. Oh, the things we get excited about... Anyways, I do so many neb medications that a normal ol' machine can't keep up with it, and we end up replacing it about every 3-8 months. It's quite ridiculous, and not to mention quite bad for me too. If the machine isn't working properly, that means I'm not getting my medicine properly either. So my new doctor helped me get a super-duper compressor that will nebulize my meds at the correct pressure needed. This means quicker treatments (yay!) and more effective treatments (double yay!). We picked that up today after lunch and I used it tonight. Super exciting, let me tell ya.
I was almost in tears tonight just thinking about how wonderful today was. I am truly happy to see that my hard work is showing even the slightest bit of payoff already. That makes it all the easier to stay with it, seeing these small results. God is good!
At our previous house, I had a small closet's worth of pantry space. It is way better than none, but with the amount of food that I am used to keeping in the house at one time (which is a lot), it was fairly tight. In our current house, the pantry is ENORMOUS. It was as big as our walk-in closet; it was a nice perk. But when we moved in, for the sake of time I'm sure, we just shoved a lot of stuff on the shelves to get it done. And ever since then, it's stuck.
The other day I turned to Jarrod and said "You know, I've been thinking that the pantry needs to be rearranged..."
To my slight surprise, he agreed and said "Yeah, I think it's time we "get organized" and, you know, not go too crazy, but maybe buy some bins and tubs..."
So I went to the store and bought 6 medium basket tubs, 2 small basket tubs, and 1 long tray. I thought eight tubs seemed like a good place to start. If I didn't need all of them, I can take some of them right back to Target.
So tonight was the night, and I started by taking some 'before' pictures, which you can click on for larger versions if you'd like...
The food side. Looking at this picture, it hits me
just how much food we actually have. As you can
see, it's sort of grouped, but not really. Again, shoved away onto a shelf.
The side dedicated to "stuff." Crock pots,
small appliances, recycling, lunch bags,
grocery bags, all thrown onto shelves wherever
they may fit. Oh, and two clocks...?
So I got to work right before dinner, taking things out of the pantry in order to figure out how best to sort them, group them, or what might be best in bins. I tackled the food first, since it was the most 'pieces' by far. The crock pots and whatnots would be tough because they're big bulky items, but I figured the food would be the most challenging.
And this is what I came up with. I used up all of the baskets I bought, plus a few other bins I found in the pantry (that weren't being filled with anything.) I think it's a huge improvement! And I'm really happy with it; feeling a big sense of accomplishment for tonight. And there is so much more room now! But I'm not going to be too anxious to fill it up with even more stuff.
Starting on the left side, we have the cereals, then disposable things;
chips, sauces, oils, and vinegars, breads;
random breakfast items and snacks, coffees, teas, and other drinks, baking stuff;
starches, an entire row and bin dedicated to Easy Mac, canned goods
(now in rows according to what they are,
[veggies, soups, soups for cooking with]), baking ingredients;
crackers and cookies, and multiples from Costco.
Slightly better than before, less junky I'd say.
Cook books have moved over to this side, many items
were removed (like the random clocks), and bags were consolidated a lot.
I got back my glucose test results the other day, and they weren't the best. Certainly not the worst, but not the best either.
But first, a little backstory/explanation...
When I got to Columbia and started going over my history with my doctor, they asked the last time I had an oral glucose tolerance test. I'd never heard of it, so the answer was: never. They were surprised to hear that, because it's something that you are supposed to do annually. So we scheduled the test for this week, the results came back saying...
My post-glucose numbers were abnormal. Normal is 140 or less, high is 200. I'm in the middle of the 'normal' number and the 'high/diabetic' number. According to what I've read, this means I am "prone to diabetes" or have "pre-diabetes." I don't know what we will do about it, if treatment is needed or not, or if we'll simply test for it every six months or something, so I'm holding off on thinking too too much about it.
Obviously the news is a bummer, but I'm thankful it's not worse and in the 200s. I have an appointment set up with the endocrinologist to get everything sorted out. I'm glad we know now; it's way better to know what's going on than be totally clueless like I was previously. This didn't happen overnight, so it really doesn't sit well with me that my previous doctors never tested me for this. But hopefully we can get me on the right track, because there is a chance that my weight and lungs could improve a little. Those are both things I have struggled with for the past couple years (read: mostly since I was at Barnes), so I'm hopeful.
So our dog Josie has been acting strange since about Thursday.
See, Thursday night while I was doing my treatments and Jarrod had gone downstairs for a couple minutes, she hopped up on the sofa... and relieved herself on the middle cushion. Jarrod treated it immediately and luckily it seems that it did the trick. I had to ask him where the spot was two days later. Thank goodness.
Then she tried to pee on the rug as we were walking into my parents' house the other night. I caught her and pulled her away from there and we went out to the yard. Crisis averted.
Then there was yesterday...
Back story: We started leaving her in the laundry room a couple weeks ago so she would have a little more room to roam and easy access to her water dish. She did really great, and hardly seemed to get up at all actually. There was a nasty storm one night and I was worried she might freak out a little; it was day two of being in the laundry room while we were gone. But I was happy to see no messes, nothing was disturbed when we came home.
Okay, yesterday. Sunday. We went to church, had lunch, grabbed a few groceries, and came home. We let her out of her room and Jarrod said "Does it smell like she peed in here?" It kind of did. I started scanning the floor for puddles, then my eyes continued to circle around the room until I saw where the pee was... on top of the washing machine. I let out a low "Oh my god..."
Plotting her escape from the vet.
She had hopped up on top of the washing machine (which is thankfully, for this case, a front loader) and peed. I think she may have used her food tub as a step up there, but still. She also chewed up her food cup, chewed up a few notes on a notepad, and luckily left my lunch bag alone (there was a pudding cup in there.) I promptly cleaned and disinfected the top of the machine and the whole kitchen/laundry floor and washed her feet. Did I mention we didn't find her on the washer when we opened the door? Which means she must have managed to get back down without breaking a leg or something.
In talking with my good friend Heather, she said that dogs peeing on sofas are some of the first signs of a UTI. And it kind of fit; she had been doing so good until now, no accidents in the house. And suddenly accidents in the house? In super weird places too?
I just got back from the vet and sure enough, she has a bladder infection.
But everyone there was really impressed about the washing machine incident...
My little morning meditation the other day struck me, as it was an extension of the conversations and lifestyle changes myself and a few others were talking about a month ago, with cutting down our time on Facebook. The quote said this:
"We fritter away time every day on silly Internet games, trashy novels, insipid television shows, and the like. And while we all need time to relax, we must be jealous of the hours we have been given here on earth to do God's work." — from Sisterhood of Saints
During my hospital stays, there are many hours wasted on mindless activities. I've never been attracted to the drama-inducing or mockery reality shows, so most of the television I watch is educational, but still: it's TV. I tried out a few games on Facebook too, just to wile away the hours (since I couldn't confer with the flowers or consult with the rain). But I found them all really boring; I only stuck with one game, and even then I played it sparingly. I haven't played it since I left. It was fine and fun, but I viewed it for what it was: a time waster.
I don't say that as an excuse, but I feel that if we could acknowledge things for what they are then we can work towards actually doing things that improve ourselves or benefit others. "Admitting you have a problem is the first step to recovery" right?
In the same way, I think admitting when things aren't helping, making you happy, or enriching your life whatsoever is the first step in finding things that do. It's a struggle, obviously, because it is so easy to get sucked into the warp. And we all need some down time, for sure.
But we all know how satisfying it is to reach the end of the day, look back on it, and think "Wow, I got a lot of stuff done today." I know God wants me to have a satisfying day much more than he wants me to have a boring day.
Yesterday was an awesome day. I finished my home IV meds! So the usual post-IV rituals of taking a great shower, body scrubs, and enjoying wearing something not a t-shirt followed.
Jarrod and I celebrated last night with dinner at Old Dutch. Even though the place can get a little loud, I am so glad to have this little gem of a restaurant in town. Dinner was then followed by Blizzards for dessert at Dairy Queen.
But the best part about all this is I'm feeling really good. And I'm feeling really thankful; I know I don't thank God often enough for the people in my life and for all of this. The exercising is definitely making a difference. Not like I did not figure it would, but I can tell that it is. The results aren't huge by any means, but there are small ways I can tell that I feel better when I've gotten a walk in for the day.
Today is exciting because, well, it's Friday! And it was a short week.
I got started on an also-exciting personal project the other day, which I will say more about another time. I will mostly be working on it this weekend, while Jarrod is working on the basement. He's started on the plumbing.
We got a treadmill. Sadly, treadmills have gone the way of cell phones in that it is really difficult to find a "basic" one, one without tons of fluff. Personally, I just need something that adjusts speed and incline. But these days, treadmills come with enormous display panels, speakers, built-in fans, music players, trainer settings, various pre-loaded workouts, links to Google maps so you can "walk on a route", color screens, the options for extra features to do iFit with Jillian Michaels, and probably a few other things on the high end models we didn't even consider. However, the extremely few choices that only have those basic components also seemed so cheaply made. Another problem I wasn't expecting was the physical size of the display panels — some of them were so tall, and I am so short, there would be no way I could see over it and see the TV.
We got one that suited me well, without too much fluff, and parked it in the front room/dining room that's not a dining room/piano room so I can easily exercise. I'm thankful for the extra space for it, otherwise we would have had to compromise the office or take down the spare bed.
For me, the key to staying with it is having a TV to watch so the time just flies by. I could be sitting on the couch watching TV, or I could get up and walk for a half hour instead. No big deal.
I am also thankful for my Netflix subscription, who knew it would play such a role in exercising. I have decided on a few shows that will cover my "30 minutes a day" routine I want to stick with:
1. Alfred Hitchcock Presents — I haven't seen many of these, but adding little doses of Hitchcock into my life sounds like some good variety. 131 episodes, 25 minutes each.
2. The Dick Van Dyke Show — I love this adorable show, and now I have a great opportunity to watch it. 159 episodes, 25 minutes each.
3. The Andy Griffith Show — I've seen many, many reruns of this but I think it would be fun to watch them in order. 249 episodes, 25 minutes each.
4. Price Is Right — Because I love game shows. Endless episodes M-F, 40ish minutes each once you cut out the commercials (Do you have diabetis?)
So yeah, I have over a year's worth of old TV shows to work with at the moment. Does anyone have any other suggestions for some shows to check out? Leave me a comment if you do!
It's so nice to be back home. We are finishing meds at home this week. I am still renewed with hope about how things will turn out this time, and it is so refreshing to have this new 'attitude' about things. I never realized how much my doctor's outlook would affect my own. It just seems like my new doctors care a little more and have much more hope for my future, which in turn has given me the positive take on everything.
I was so very excited last night because I was able to take a fairly brisk walk with the dog for almost 1 mile! I could barely eek out a quarter-mile prior, so I was exuberant once I was finished and made it back home, realizing "I made it!"
Unfortunately, it's going to be the hottest week of the year here, which I'm not looking forward to. Not only do I have a giant sticker on my chest, in a way, I don't get to shower much with giant sticker/IV site on my chest, and mega humidity makes everyone feel gross. Yay... Plus, my choice of clothes is limited because there are only so many shirts that have a neckline high enough to cover up the site, pretty much all t-shirts and a few polos, but no sleeveless shirts which is what I'll be wanting most this week. I dress super casual while I do home IVs.
Great news today. No, scratch that: spectacular, stupendous, outstanding, splendid, magnificent news today...
We did a pulmonary function test, to see where we're at and if we're on the right track, and I blew a 35%! When I came in last week, I was at 24%, not good. But this is awesome! I am already better than I was last time I was in the hospital at Barnes; after we were finished, after two weeks of treatment, I was at 34%.
So already at one week, I'm back up to where I was. And now 40% doesn't seem so far away!
Today has been a really good day. And even though the hospital is always a sucky thing, I am feeling so positive this time around and can't say it enough: I feel like I am right where I need to be.
Do you ever have moments like that? Where you feel like God has brought you to the place you are meant to be? And you can trace the small path that brought you there? Thanks to my friend, who also has CF, we began having conversations earlier this year about switching away from Barnes. And that all happened because of Mary, a lady my mom works with, told my mom about something she (friend with CF) wrote on Facebook, which prompted me to email her. And then thanks to Jarrod and his consistent urging that I call Columbia. Then I finally called, I bumped up my initial appointment because I wasn't doing so hot, we came here Tuesday, it turned out I really wasn't doing so hot, and now I'm here. All because God put these people in my life.
Today started out great with Jarrod coming here early to eat breakfast with me. We both ordered breakfast trays from downstairs. I'm happy to say the food here isn't bad, and their breakfast is actually really good. You can order custom breakfast sandwiches, which is what we both got this morning: choose your bread, choose your egg, choose your cheese, choose your meat, and voila, yummy!
This morning, a Eucharistic minister brought me communion, too. Not only are they taking good care of me physically, I've been extremely pleased at the care my spirit is receiving too. They must have a great volunteer community in the churches here; so far, a woman brought me communion on Thursday for the Feast of the Assumption (I assume, but maybe it was just her day to visit), the hospital chaplain stopped by that night as well, a priest came by Friday and gave me a blessing, and then communion again today from yet another person. How awesome! I always thank them for coming by.
Jarrod hung around for most of the day and we went for a walk. We discovered the "Healing Garden", in the middle of the hospital. It is surrounded by four walls, but they are all glass and very nicely done. The small garden has plenty of seating, some plants, flowers, and trees, and a little waterfall which makes for a peaceful place. It was nice to get some sun and breathe in the fresh air. It struck me, too, how much quieter this place is instead of Barnes since it's not sitting next to a busy road or interstate (not to mention the lack of ambulance sirens due to the ridiculous violence of north St. Louis.)
Then Jarrod's parents came by for a visit, which was great. They all headed out between 4-5:00, so I've had the evening to myself. I'm looking forward to tomorrow, when my parents are coming to visit, and because I will feel even better tomorrow. I just know it!
Keep the prayers coming and know I am praying for you too. Cheers.
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