Friday Fast 3

I'm only doing three today, since my three that I have are long.

Nummer Eins
Our dog can be strange sometimes. Almost daily, Josie will wander off. I'll notice she's gone after about 10 minutes or so, and decide to go find her to make sure she's not doing something she shouldn't. I have lately been finding her in our bedroom or bathroom, but it's so odd it makes me laugh. Sometimes she's standing in our bathroom, staring at the floor, sometimes she's just laying near the foot of our bed. One time I found her half standing in our shower, half not, staring at the floor like like she was confused. Another day I found her just laying down in our closet. Not, like, curled up in a ball, but paws forward, head up, like it's the most normal thing in the world to want to chill out in the closet. It's so random and goofy. Maybe she's playing hide and seek with me, because she probably knows that I will eventually always come looking for her. I'll see where she decides to hide out next week...

Nummer Zwei
This week Apple re-introduced a smaller iPhone the same size as the one I have from 2 years ago. I'm glad, because I'm not a fan of the bigger phone trends. Along with that, they updated their software which I installed on my iPad yesterday. One new feature is the "Night Shift" option. Night shift removes some of the blue light from your screen during evening hours. The theory is that all of us who use our devices an hour or two before bed are getting less or poorer sleep due to the 'blue light' emitted from the screens. It is said that it messes with our brain and sleep chemicals our body produces to help us become tired and fall asleep. But the jury is still out on whether this is true or not, or how much it actually affects sleep. 

However, what is known is that blue light is damaging to our eyes. I know this from my eye doctor and since I wear glasses, I am always offered (and encouraged, since I have a job using a computer) to add a protective coating to my lenses that helps block the damaging effects. 

I tried out the "Night Shift" option last night, and it basically makes your screen more orangey. But after some time, you get used to it. And when I went to turn it back off, the quick shift back to normal on my screen actually hurt my eyes. Apple is pushing this as a way to help us sleep with set hours for the option to come on the evenings, but I'm wondering if it should be enabled all the time? If my eyes were already more comfortable in that short time, maybe it's something for me to consider. The problem is, being the designer and creative I am, I like my colors to be as true as possible. White is no longer white, it's a warm off-white. I went back and forth with LED lightbulbs because I didn't like the slightly different light they cast, but now I admit I'm used to it and don't notice as much if it's different than incandescent. I'm due for my yearly eye checkup, and I think I'm going to ask my doc about this feature, see what he says. But maybe I should just put up with it for the sake of my eyes? 

Nummer Drei
As Lent comes to a close, I'm faced with a decision: keep up with my Lenten resolution, or go back to old habits? I semi-failed at my first Lenten resolution, so partially in to Lent I switched it up and gave up Facebook on my phone. I need it for my job, so I couldn't just stop entirely, but taking it off my phone felt like a decent plan. 

The first week was the hardest, and I realized that checking it was something that was hardwired into my brain, because I would swipe over and hit Facebook with no thought, only to be met by the login screen because I forgot I signed out for Lent. I had this innate desire to look at it for that first week, but once I got past that point it wasn't so bad. For the most part I didn't miss it a whole lot. I won't pretend I was necessarily making 'better' use of my time, but I'd rather watch a show or movie I enjoy, or read or crochet, or just sit in silence, than scroll through stuff on my phone. So personally, I find that a better use of my time, even if it's still not all that useful, haha.

For now, I think I'm going to stay logged out. I'll allow myself to log in on occasions I need to, like for a group I help manage, but I want to try to stick with this. I'm a bit of a news junkie, which fits well with my job, but I gotta be honest that the election coverage is really getting me down. I realized that seeing those headlines so often—even though it's unintentional—in my feed is bad, and I need to distance myself from it. When I log in to Facebook less, like I have been, the most important stories are on top from people I care about, it takes no time to get through them, and the rest is just filler.

Friday Fast 5+5

It's been so long since I've blogged, I'm going to have TEN things this time!

1. I have barely been on my laptop, so I realize I never caught you all up regarding my recent hospital stay (and to the people I need to email back, I will get to it soon I promise :). I'm DONE, I finished my meds at home on the 31st, and am feeling really good. Actually, I had the best PFT I've had in years! The last time I had numbers this high was in 2011! I was able to achieve a 38% FEV1, which is just crazy. I can't stress how awesome and important this is. Now, I just hope to keep it up.
2. I felt the power of prayers this time, I must say. I started out with very, very resistant bacteria as stated in my previous blog. But midway through the course of treatment, the results came back with my cultures and showed my bugs had become more tolerant, and lo and behold they were responsive to the drugs we chose to use! I also have to really hand it to the parishes of Columbia. I was visited by a priest twice, who administered a blessing, a deacon, and volunteers who brought me communion. All told, I was there for ten days, and for probably 6 of those days someone came by my room to pray and bring me communion. Really great.
3. I've finally started reading the Lord of the Rings trilogy. I really like the movies, and the story. I'm really excited to read it and it's keeping my interest.
4. Once again, I have really struggled with a Lenten resolution this year. I think part of it is that I feel like I should do something new and different year to year, but I've pretty much run out of ideas. Honestly, last night I still hadn't come up with anything—I know, Lent started on Wednesday! Augh! But this morning, I decided. It'll help give me some needed inspiration day-to-day. 
5. I started a new prayer shawl the other day with a new, fancy stitch! I'm very excited. Jeff & Johanna gave me a book for Christmas with 500 crochet stitches in it! So I'm trying a new stitch from the book, and it's turning out quite nice.
6. I've complained on here before about the TV news just perpetuating fear, and the other day was proof again of what I've been saying. CBS This Morning had a report about the zika virus, and it was titled Zika at Mardi Gras. They sent a reporter down to New Orleans to talk all about the zika virus and the mosquitoes. The report went on and on for about 5 minutes, then at the very end he said "Now, officials say that they're not concerned about mosquitoes at Mardi Gras because it's simply too cold. But the threat of the zika virus will continue as the year goes on." So basically the report was about absolutely NOTHING because it's not even a concern anyways. But it might be. At some point in time. Everybody stay scared!
7. I've often thought Josie looks very fox-like. I looked it up, and contrary to popular consensus, dogs are split in two groups: those related to wolves and those related to foxes. Josie is definitely from the fox category. Just look at her!? 

   

   Josie shows her good side to the camera, haha.

8. Does anyone else forget to drink your coffee in the morning, haha? Almost every morning, I pour myself my cup of coffee, take two sips of it, then I forget about it. And then it's cold, and I reheat it, and forget about it again. 
9. I feel like our tolerance for snow here is going down, likely it's caused by the TV weather people, and we're all drinking the Kool-Aid, including myself. I'd love to watch a weather broadcast from the 90s or 80s, and see what they said then. Because now, even the mention of snow in Missouri sends schools canceling classes sometimes. Many people freak out over 1 inch of snow. But I don't feel this was always the case. Snow-freaking-out-ness is definitely relative and dependent on where you live. If you live more north, it takes a great amount of snow for things to shut down, if you live more south it takes a dusting to freak everyone out. We've always been in the middle with snow totals, but it's still expected that it will snow a few times a year here. Why are we all such wimps about it now?
10. With our recent snow, I've had a TON of birds on my deck and coming by the feeder. I assume it's harder to find food when snow blankets the ground, so I've been happy to give them some easy-to-find bird seeds :).

Godspell at Church

Did anyone else think of Godspell with the second reading at mass this weekend?

Dearest brothers and sisters: All good giving and every perfect gift is from above,

coming down from the Father of lights, with whom there is no alteration or shadow caused by change.   James 1:17

It's been a while since I watched the Godspell movie from 1973, and I really forgot how hippy-dippy it is; possibly because the last time I saw it was in grade school... I think. Micki, our music teacher, let us watch it on days when we had a sub or on "popcorn days", which were days we earned to watch a musical movie. This scene, out of context, is laughable. But great music nonetheless! Here's the video (email peeps, YouTube clips don't show up in the email, so you'll have to view the post on the website to see it if you want):

CF Awareness

Last week was the annual Race Across America, aka RAAM, which is the crazy extreme bike ride across the entire country from California to Maryland. As usual, our town was along the route and once again the local bike shop was one of the time stations. Riders and their support crew from all over the world came right through our town. I think that's just so cool.

Our time station here is unique, because it's actually a destination instead of just some mile marker or a tent along the side of the road, and I have personally heard people say it's like an oasis and they think they're dreaming. The volunteers provide food, drinks, a little pool to cool off in, not to mention the bike shop to fix things, and—hopefully—good company and a change in the faces you see every day.

Last Wednesday I decided on a whim that I would help out for the afternoon. I talked with people from Australia, Brazil, Japan, and Britain. As Vicky, a lady who does this every year for as many hours a day as she can, says "I can't travel the world, but here the world comes to me."

So this one crew came in, and I'm talking to this guy, welcoming him and letting him know where he can find the food and drinks, the usual drill. He holds out his hand and says "Hi, I'm Jay." I said "I'm Jamie," and he chuckled and said "Oh, that's easy." He was their head crew chief, I found out, and I was asking where they were all from. Their group was from everywhere, from Arizona to New York, to Florida, plus a couple Europeans. He himself resides in Colorado.

I then asked what charity they were riding for and he says "Cystic fibrosis."

I think my mouth kind of fell open, I stopped and was like "Really?" And he, confused a little, said "Yeah."

I then told him "I have CF." He kind of put his arm around me and had the same awestruck facial expression I did when he initially said it. I almost couldn't believe it, and he walked me over to show me their van and there was the CFF logo right on the side.

So then he was asking me about what gene mutations I have, if I did the vest, how I'm doing, if I'd be able to take any of the new drugs they're coming out with, which are all great questions and clearly this guy actually knew about CF. I told him about my recent hospitalization and said I was doing well and getting back to the gym. I asked how he got involved with raising money for CF, and I believe he said a friend of his has a son with CF.

He wanted to introduce me to a bunch of people in their team, he said they'd want to meet me, and we obviously told them that I had CF. I thanked them for riding and such and they were all so nice. You hardly ever meet a group of crabby people during this RAAM, but this group was really fun and groovy. They hung out for a while too while waiting for their teams—typically some of the crew will venture ahead to take a small break when they can, so they were ahead of the people actually riding the bike.

This is Jay, my new best friend that day.

A little later Jay and I were chatting again, and he said "I'm sorry, I'm kind of tearing up. This is just..." and he shook his head in disbelief; I said "I get it, I think this is so great and I am SO happy we were able to cross paths." They were called Love, Sweat, and Gears (and in bike nerd-ness, they were also cool because they had a team riding on tandem bikes, which you definitely don't see every day.)

Augh... it was just the coolest thing! I mean, how awesome that I just happen to be working at a time station for this random bike ride at the exact time that a team comes through and they're raising money for CF? And I happen to strike up a conversation with their crew chief? I mean, how awesome is that!? It was definitely a God moment that all of this came together, clearly we were all meant to meet each other. I still can't get over it... SO COOL!

One of the tandem teams.

Fast-forward to last night, and I went downstairs to treadmill, I turn on the TV and was going to watch American Ninja Warrior while listening to some tunes. So, I can't hear the TV but I see this guy walk up and it says he's from St. Charles, MO, so hey that's cool. And he is wearing a shirt that says "CF Warrior" on it. Obviously that registered in my mind, but CF can stand for a lot of things so I didn't take much pause. Then they launched into his back story, like they do for some contestants on shows like this, and he's talking about his cystic fibrosis. I pulled out my earbuds to listen and wow, also a cool story/God moment.

He talked about how he decided to get in shape and exercise and doesn't need medicines as much to manage his disease (you have to be incredibly fit to do these ANW things [they make it look so easy, but it's incredibly hard stuff.]) And obviously, the commentators honed in on the inspiration part of it and such, but ya know what? It really was inspiring. For me, at least. Especially since I saw this right as I began my own workout, it inspired me to kick it up a notch. And I did: I ran 2 1-minute intervals along with the rest of my walk on the treadmill, and walked/ran a total of 1.35 miles in 30 minutes. Woo hoo! I had a short coughing fit when I was done, but I felt GREAT afterward.

From the Worst to the Best

This week has been quite the week. It started out with some bad news, then good news, and finally news that I will most likely go home tomorrow.

On Monday I was dealt a huge blow. My doctor made her rounds, and when she stopped by she told me that my sputum culture results were starting to come back. But it was not good: my culture was coming back pan-resistant to all of the antibiotics so far. It wasn't completed, there were still a couple meds that maybe would come through as sensitive, but it was not looking good.

Before I continue my story, I'm going to do a little CF301: Sputum Cultures here to explain everything I'm talking about, as a refresher or in case you're confused. Every time I come in the hospital or go to a clinic appointment, I do a "sputum culture" which is where you cough up something and send it off to the lab. It takes 5 days to complete, because the ones they do for us CFers are very detailed. So once at the lab, they determine A. what bacteria are growing and B. the drug sensitivities of said bacteria/bugs. The two biggest players in the CF world are MRSA (staph, as everyone has heard of) and Pseudomonas. There are others bugs that are bigger concerns, but those two are the most common. There can be different strains of the same bacteria. Each one is different, each one can have different sensitivities. When I say "sensitivities" it means if the germ is "sensitive" or "resistant" to a specific medication. As in, a medication will work with something that is sensitive, but it won't if the strain is resistant. Ok, we good? Good. I shall proceed with story...

So the pseudomonas bug that I have was coming back pan-resistant... which means it was resistant to everything. Again, the test wasn't completely finished, but out of the meds they had tested so far, it was resistant to all but two. This is not good, and something to be feared. What it meant was that the meds I was already on were doing nothing, and there would be no meds I could take to get better... because it's resistant to everything. If you're thinking Well... how can that be, there must be SOMETHING right? Sadly no, there are cases where bacteria become resistant to everything and then, according to my doctor, you just hope and pray that things change and that what you're doing just maybe gets through and does a little damage to clear out some of the bacteria. This is what the medical community is concerned about and there are news reports every once in a while about anti-biotic resistance; this is exactly what they're talking about.

It honestly took a little bit for this news to sink it, but once it did it was really hard to deal with. Knowing there was a strong possibility that I was not going to be able to get better was scary. I called Jarrod to tell him what was going on, and he obviously had a lot of questions, as did I. Unfortunately, I knew I probably wasn't going to be able to see my doctor on Tuesday to clear up some answers, but would have to wait until Wednesday.

Tuesday was not the best day. I was trying to stay positive and hang on to some hope that maybe, just maybe, those last two meds would come back with an S showing they were sensitive, and we'd have two meds we could work with, and also knowing that my bugs switch up all the time as to what they are sensitive to, so maybe at a later time I'd regain some sensitivity. I had a few moments of crying throughout the day, and explained to one of the head nurses who stopped by how I was trying to stay positive with the news, but it was tough.

I prayed. I really tried to talk to God to help me through this, and when the eucharistic minister brought me communion that morning, I burst into tears. (As a side note, receiving communion in the hospital is so much more personal than at church. I know you place your hands out to receive the body of Christ and it's pretty much the same motions, but there is just something different about having a one-on-one experience when the person is right there, in your room with you, saying "Behold... the Lamb of God who takes away the sins of the world..." like the priest does at the altar but she's holding it right there in front of your face for a much much longer time than when you're at mass, and you're the only one responding. It can be extremely moving, and it was especially for me on that day.)

I talked to Jarrod in the afternoon and we decided I should ditch my anti-visitor rule, and he should come up here. So he did, and I'm so glad. It kept my mind off of things and it was just so good to have him here. We finalized our vacation plans, which I'll talk about another time, but it was good to get my mind thinking of something I'm looking forward to. He ended up staying the night too, so he could be here when my doctor came around to talk to me.

So on Wednesday around 1:30, my doctor came in and she said she had good news. My pseudomonas came back almost all sensitive! With the exception of like three meds that had an R next to them, the rest had an S. I was stunned. Two days ago, when I was looking at this same report, I was seeing all R's. But they somehow had all changed to S. And! This time I only was growing one strain of pseudomonas, and that's it. Last time I was here I had 3 different strains, plus my MRSA. But this time I didn't even have staph! No staph. Like... I can't even remember the last time I didn't have staph when I was in the hospital. I have cultured staph for a very, very long time, fairly consistently. I could not believe it, I was so speechless and on the verge of tears of happiness.

This whole incident was so unexplainable, I have no other explanation than that God heard our prayers. I know the test was not completed on Monday, but like I said, when I looked at it everything had an R by it and on Wednesday, those exact same things had changed and now showed an S. I have to believe that God is not done with my lungs yet.

The other good news I have is that I will most likely be coming home tomorrow. Barring some sort of unexpected bad PFT tomorrow morning, I am scheduled to come home on meds for the following week. I haven't done home IV's in a long time, but with the flu and everything here, I figured it would be best to come home as soon as was reasonable. We were thinking of waiting until Monday, but I am kind of anxious now that I know I get to go home soon. 

God is good!

Prayer Shawls

Our church started a prayer shawl ministry about two months ago and they have already handed out shawls which have brought comfort to their recipients. I enjoy crocheting, but I can only crochet myself so many throw blankets before they're overtaking the house. I'm sure Jarrod would argue we already have too many, between the ones I've made, received, and bought. So this is the perfect way to crochet for a purpose.

Anyways, I finished my first one! It is a simple stitch pattern that I made up thinking Oh this might look good. I think it creates a nice look. I need to drop it off at the rectory, and while I'm there I want to talk with them more about the ministry to find out who is heading this operation because I have some ideas about making the shawls just a little bit more special when they're given out.

I have another shawl I've been working on, have started a new one, and have plenty of yarn for many more.

It's a simple combination of 1 chain, 1 double, and so on.

Happy Saturday

Yesterday morning an inspector from the city came for the inspection of our basement. I didn't know what to expect, but it didn't take very long. Josie could hear him talking to Jarrod in the basement and she kept running down the steps, stay down there for a little bit, give a frustrated high-pitched bark, and run back up. It was funny. Anyways, yay we passed! Jarrod said he had a few suggestions on things, but he passed us. So thank goodness for that, the first phase is officially DONE and in the books. On to phase two.

I finally came up with a Lenten resolution on Wednesday. It's twofold and it will undoubtedly help my health in some way. I decided that on the days I don't go to rehab, I will exercise immediately after work, no waiting around saying "I'll do it later." Then I make sure to get it done and also, hopefully, get in the habit of doing it this way.

The second part deals with eating. It's hard for me to write about my weight, not knowing who might read this. I know so many people are trying to lose weight, but my life depends on me trying to go up on the scale. Let's just say that in order for my BMI to be where it needs to be, I need to gain 10 pounds. If you know how hard it is to lose ten pounds, then flip it around and I guarantee that it is just that difficult for me to gain ten pounds. I know I won't gain that much during the season of Lent, but I need to start eating more as I've been a little lax on snacking and my Ensure drinks lately. So part two deals with that.

Lent Eve

I'm not a huge fan of New Year's resolutions; they're over-hyped, no one sticks to them anyways, what's the point? But I am a big advocate of Lenten resolutions. However this year I am really struggling with what mine should be.

Here I am, the night of Fat Tuesday, and honestly I still don't know what I want to do. Last year I resolved to read the Bible every day and exercise every day. I've got the exercise covered this year, and I guess I could read my Bible again every day, but I've been trying to come up with something different. It's been really tough. I've sat in silence trying to figure it out but it is just not happenin' this year.

A Blessing

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'm Finally Ready to Talk About It...

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. :)

Updates and Prayers

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.

More Thoughts on Time

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.

Angels Among Us

This local news story has gained international attention, and I felt it worth passing on myself. At a horrible accident in eastern Missouri, a priest suddenly comes out of seemingly no where to pray with the girl trapped in the car. Then he disappears. Angel? Read it and decide for yourself, but that's what I'm going with. :)

Getting Better

Today has been a better day, but my cough is still pretty gruesome in the mornings. This is typical for me, I've always coughed most in the mornings, but it is a little worse than normal.

When I called my doctors Monday, I requested to try some steroids to open up my airways before we resort to antibiotics. So that's what we're trying. I've gotten two full nights of sleep the past two nights, and let me tell you how wonderful that's been; to wake up with my alarm and then realize "Hey! I didn't wake up overnight to cough!" It's been really nice.

The other night when I was going to bed early, I opened my nightstand drawer like I usually do, and pulled out my prayer books. I have three in there. One is a leather-bound, gold flake on the edges of the pages, written in the 1980s kind, another is a freebie I picked up at St. Joseph's in Wentzville, and the other is my favorite childhood prayer book from Precious Moments. It's a tiny 2"x3" book with prayers directed towards children, and I still like to look through it sometimes because it's so darn cute and, well, sometimes simple prayers still apply. I also found a little prayer card my mom made me with a prayer asking for sleep, which was oh so appropriate. She made it for me back when I was in college, I think, and most likely going through a similar time as I am right now with the night coughs. As I was paging through my leather prayer book, a Prayer in Time of Suffering hit home and I took solace in it. I thought I would share it in case anyone else is suffering this week, because it is really quite nice.

The prayer goes like this:

Behold me, my beloved Jesus, weighed down under the burden of my trials and sufferings, I cast myself at Your feet, that You may renew my strength and my courage, while I rest here in Your Presence. Permit me to lay down my cross in Your Sacred Heart, for only Your infinite goodness can sustain me; only Your love can help me bear my cross; only Your powerful hand can lighten its weight. O Divine King, Jesus, whose heart is so compassionate to the afflicted, I wish to live in You; suffer and die in You. During my life be to me my model and my support; At the hour of my death, be my hope and my refuge. Amen.

Lenten Resolutions

Well, today is the first day of Lent. I have been agonizing over what my Lenten plans should be, because I always have a hard time coming up with something. I can't give something up, or my weight will suffer. I've done it in the past, giving up soda for one, and I ended up dropping a few pounds. I know, it probably sounds awesome to be able to do that, but it is not good for me at all. I have to keep my weight up to stay healthy. I definitely notice a difference when my weight is down, it is much more difficult to get around.

Anyways, giving up something is "easy" if you ask me, because it's very cut and dry. But this morning I decided on two things that will strengthen me both physically and spiritually.

The first one is I will read the bible every day. Even if it's just a short passage, it's something. Like most things, I've found that once you start it is easy to keep going, but you have to pick up the book first. I have this daily bible reading plan from a friend that I've had for years now, so I think I will probably use that as a good starting point.

The second thing is I will exercise every day. I've been doing much better lately, doing something ALMOST daily. But I'm going to discipline myself and do something daily. This one is going to be tough, since sometimes there are busy days that don't allow much time for this (or so it seems.) I think I was scared to commit to this one, but this morning Jarrod prompted me that it's what I should do. And it is, I know it, but this is big, we're talking lifestyle change. I can't skip a day, not one! (I know Sundays aren't technically part of Lent, but I think that's a cop out to allow yourself a break on Sundays.) So if it's bed time, hypothetically, and I haven't exercised that day I can't let myself go to bed! This will be a complete new way of thinking. I'm hesitant, but I hope it'll become easier and by almost routine by the end of it. Don't they say it takes 6 weeks to form a new habit and 2 to break it? Well, this will be six weeks... and it's going to be tough...

But that's the point. Lent is supposed to be hard; a small sacrifice. And when I think of the pain and suffering that Jesus went through for my sins, what I'm doing pales in comparison. But it's still a sacrifice, and it will be good for me. Lent is supposed to be a great time to learn, a great time to strengthen yourself, a great time to grow closer to God. By taking care of myself I can have better relationships with those around me, and by having those I can experience God's love. By reading the bible daily, I can further deepen my faith and enrich my personal relationship with God.

I don't believe in New Year's resolutions, but I very much believe in Lenten resolutions. I am much more likely to succeed by offering it up as a sacrifice to God.

Easter

Happy Easter everyone! It's been a good day today, starting with mass, visiting with family, sitting outside, and then visiting with more family. Mass was great. We decided to go to Lourdes, so that was nice to see everyone; Lourdes is still my parish 'family'. Our priest told a cheesy joke to start off his homily, and it's hilarious to see him sprinkle everyone with holy water because he just laughs the whole
time watching everyone's reactions to getting wet. It was some of the most beautiful weather today too, and it was great to sit outside all day. We're back home now, and trying to chill a little.

Easter today meant a little more to me than usual. I can't remember the last time I updated this, but here's the latest on my health: I'm doing so-so. Unfortunately all the meds and treatments we did in the past few months did nothing for me, and I'm still where I was when we started. That's just the way things have to be right now. My body needs a break from meds right now, so that's mainly why I'm not back on something. Of course, were I to get sick, we would treat it, but since I've not caught something, I just have to hang tight. But I'm not gonna lie: it sucks. It really sucks. I'm coughing more than I ever have in my life (for a normal day), my treatments don't go too far, and I am frequently tired and worn out. I'd say almost every day, by the end of the day, I'm feeling pretty blah (as in, not breathing well) and I'm also tired. This past week I've been waking up every night coughing as well, and/or coughing when I lay down to fall asleep. So I've probably been averaging four hours of sleep on top of all this.

I had a huge breakdown and let out a lot of anger and frustration about this on Friday, and then today's Easter message spoke to me. In our priest's homily he was talking about believing in the risen Lord
and turning to Him when we feel hopeless and helpless... I can't think of two better words to sum up how I felt on Friday night. So Easter, for me, really felt like God was trying to call me back, remind me He's still there.

But I now realize that He's been doing that for a while. And will continue to. Yesterday at the baby shower, I had many people ask me how I was doing. But it wasn't your typical greeting of "How are you?" It was a true, caring "How have you been doing?" or "How are you feeling?" This morning at mass, I had more people ask me how I was doing and said they were praying for me. My friend Doris, who is the most religious woman I know, greeted me with "May the risen Lord heal you!" and hugged me saying she had been offering up Holy Week for me. God is definitely talking to me through all these special people. It's slightly strengthening, even when I feel like I have none.

Post of thanks

As cliche as they are, I think I'll do a Thanksgiving-inspired post. Reflection is nice, anyways. And just to get them out of the way, yes I am thankful for family and friends, but I'm not going to expound on those much.

I'm thankful for my house. Jarrod and I were able to purchase our first house this year. Yeah, it's kinda small at 1200 square feet, and yeah, it's not the closest thing to where I work, but it's home. But that's why it's called a "starter home." 

I'm also thankful for Jarrod. In a moment of enormous frustration the other morning,  he calmed me down, and was so understanding even though I had just had a meltdown. Stuff like that is why I married him, not to mention his complete acceptance and understanding of what I have.

I'm thankful for my parents, and that I can depend on them and talk with them like I always have. Even if I don't live there anymore.

I'd also like to interject that I'm thankful for this snowman mug of coffee on my desk right now. And that I have the chance to brew a strong cuppa, just the way I like it. And snowmen are cute.

I'm also quite thankful for my job. At this time last year, I was in the wake of being laid off at the end of October, desperately looking for some sort of work. With a stroke of luck, my parents decided to eat at Joe's last Black Friday, and ran into a local business owner, who informed them they were swamped and needed someone to help out around the office. And that she'd love to have me there. I 'interviewed' (let's be honest, she was already planning on hiring me) and got a job. 

Then come February, they had a couple changes and my hours were getting cut. Crazy of all crazies, at that same time the Missourian called me up about a job they really didn't advertise for. In the previous November, I had applied there, and they still had my resume from that and wanted to talk to me about working part-time. I worked both jobs for a period of time, then my other one ended, and I became full-time at the paper. 

So in less than a year (from today, at least) I've gone from unemployed, to full-time, to part-time, to two jobs, to one full-time job, to becoming officially permanent, to also getting a promotion and a new position. Wow, what a roller coaster I guess. It's obvious why I am so thankful for this one. I'm in a great spot career-wise in that I get to do a mesh of things I like. And as we all know, doing what you love is the biggest battle in the working world.

Moving on, I'm thankful for Twitter. Seriously. Never in my life have I been able to consume the kind of design-driven, awesome, creative content that fuels my brain with this much ease. I love checking Twitter daily and what my next awesome find will be.

And I feel like I should be thankful for my health, but honestly that's been kinda hard lately. My health and me have issues. And I just got done with a big ole tune-up, my lungs were so happy, and less than a week after finishing that up, I guess I caught something. My lungs were no longer happy, actually they were quite pissed off, and so was I. I mean, come on God! One week? I got to enjoy ONE WEEK of good health? Anyways, I'm back on some antibiotics to fight this off and it's been difficult. But, like I said, I feel like I should be thankful for what I do have. I'm not on oxygen, so there's that. And I didn't have to go right back to the hospital. And, I can still get around semi-okay and take care of myself, so that's worth being thankful for too, right?

Anyways, it's been a great year, possibly one of the best I'll have in my life I'm going to guess. Certainly eventful. Much to be thankful for. (How did this turn into a New Years-esque reflection? lol)

Books books books

Last night I finished 1984. It's about time, too... it only took me three years, haha. Anyways, I must say I am glad I read it, though I'm going to take a break from the dystopia books for a while. Had it not been for my true push to finally finish the book, and my self-made rule that I couldn't read anything else until I finished one of my books-in-progress, I might have put it back down. The ending is a very uncomfortable one, and I tell you, when he looked at himself in the mirror, that was the worst of it for me. I can't explain why, but it was. Anyways, still glad I read it and it's 'message' is kind of percolating in my brain right now.

So I woke up early this morning in order to get a good shower in, since I'm heading to the hospital and won't get one for another week. And I had time to start another book. I chose to start reading Crazy Love: Overwhelmed by a Relentless God. I started the book, and after 20 minutes of reading, I closed it. I decided to look up the reviews on Amazon about the book. I was specifically hoping to find someone out there who said something like "Being a Catholic, I still thought this book was great" but I found no such thing. I found one review that said this: "His disclaimers aside, it is my opinion that Francis truly, deep down, believes that the believer's work is mystically tied into their salvation. His denials are only at a superficial level so that he can remain "evangelical" and avoid the necessary soul-searching that might lead him toward a Roman Catholic-esque theology." which I found interesting. Anyways, let me step back and explain this Amazonian search: the book was written to "Christians" and had lingo of "Being a good American Christian" and things like that, and I just can't get into that. Catholicism is still Christian, yes, but there is a huge difference between our beliefs and those of a non-denominational Christian (the author.) Never once has my priest ever, EVER said in mass "as good Christians we should blah blah blah." (he usually says good stewards, servants, or something like that.)

Needless to say, I'm taking this book back. I'm sure there's a nice message in it, but it's just not for me. Plus, the whole thing is just one big ongoing sermon. Nah, I think I'll pass. And if I do feel the need to read it, I'll get it from the library.