Sunday, December 1, 2013

Tomorrow, Tomorrow

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.


Saturday, November 30, 2013

The Best Thing I've Read This Week

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.

Friday, November 29, 2013

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?

Thursday, November 28, 2013

Happy Thanksgivikkah

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.) 



Monday, November 25, 2013

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. :)

Thursday, November 21, 2013

Hospital TV

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

Sleep, wake up, repeat.

Yep, it's pretty boring here.

Wednesday, November 20, 2013

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.

Monday, November 11, 2013

Not Good :(

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. 

Wednesday, November 6, 2013

JCP, Tale of a Struggling Store

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.

Tuesday, November 5, 2013

Checkout Lines

I just returned from one of the most cliché-awful Walmart checkout line experiences one could have.

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.

As Charlie Brown says, "Good grief."