Wednesday, December 29, 2010

2010 Blog Highlights

In January, I discovered how important it is to be completely compliant with my CF team.

In February, Morgan turned six months old. We also took our first family field trip, during which Shylee made an interesting observation that we still laugh about to this day.

March found me contemplating motherhood and what I'll tell Morgan about certain decisions I've made in my life.

April was all about post-baby life: my body after baby and my highest PFT's since before pregnancy.

In May, I wrote about the wonderful mothers in my life.

In June, Morgan got blamed for our terrible sleep habits and Adam got just some of the credit he deserves for being so amazing.

I was involved in a freak accident in July (more of that story can be found here, here and here).

August was a busy month, what with Morgan's first birthday, and a surprise hospitalization followed by home IV therapy. Somewhere in the middle of the stress, I found a new perspective and the month ended well.

In September, I embarrased my doctor when I said just a little too much and attempted to describe what living with a chronic illness is like.

In October, I fell in love with fall and took advantage of the beautiful weather by napping in my car.

November was a time for babies!

December brought about another hospitalization and a lot of time to contemplate life.

Monday, December 27, 2010

It's THAT time again

On Christmas Eve, I could feel a cold coming on. You know the feeling: way in the back of your throat, before it's actually sore you feel a bit of a scratchy, tickly feeling and you just know you're getting sick. I have to admit, I wasn't really surprised. When I saw the green goop coming out of Morgan's nose a few days before, I figured it was only a matter of time before I'd catch whatever was going around. And then when she kissed me and got some of that green goop on my lips, I knew there was no escaping THE COLD.

Christmas morning was fabulous, and I have never had as much fun opening presents as I had watching Morgan tear into hers. As the morning went on, however, I started feeling worse. Much worse. By noon, I was fairly certain I was dying. Aside from the sore throat and runny nose, my body was aching and I was already starting to cough quite a bit. Then my back started hurting. A lot. The pain spread to my stomach and eventually it even worked it's way down to my thighs. It reminded me of... hmmm, what would be a good example? Oh yeah, it reminded me of that one time I spent twenty hours giving birth to a baby.

By this point, I was really worried. I knew it was more than just a cold, but on a weekend -- make that Christmas weekend -- my only option for medical care would be the emergency room. Although I was at that very moment writing my Last Will and Testament, I wasn't entirely sure an ER trip was warranted. So I took some ibuprofen and went to bed. And when I woke up four hours later, it all made sense. Now, I know for a fact that there are some men who read this blog and might be very uncomfortable if I said that I was experiencing my first post-baby period (Hi, Grandpa!) so I'll just say: it turns out I wasn't dying. I just forgot what it's like to be a woman.

And I'm glad I didn't jump the gun on that whole emergency room thing.

Friday, December 24, 2010

Wishing you and yours...

Oh the weather outside is frightful,
But the fire is so delightful!
And since we've no place to go
Let it snow, let it snow, let it snow!

Or, how about:

I oughta say no, no, no!
          Mind if I move in close?
At least I'm gonna say that I tried.
         What's the sense in hurting my pride?
I really can't stay.
         Aaah, but it's cold outside!


I've always enjoyed Christmas music, especially the fun, upbeat kind. In our house, all things Christmas are fair game the day after Thanksgiving -- including holiday music! This drives my husband absolutely crazy, but I like to think it's one of those quirky things that makes him love me even more. (We won't ask him for his honest opinion on that.)

Some of my favorite Christmas memories are centered around holiday music. Like the time my siblings and I all stood in a line - shortest to tallest - in front of my big bedroom window (to watch our reflection, of course) wildly waving our arms up and down to the tune of My Favorite Things. Or the time that my sister and I, after watching our town's Christmas Light Parade, walked arm in arm back to the car and made a lame, but very loud, attempt to sound Swedish (?) while singing Sleigh Ride. "Outside the snow is falling, yah. And friends, yah, they are calling yoooo-hoooo. Yah."

This year, just after Thanksgiving, I was driving when a familiar song came on the radio. Not one of the cheesy, fun songs I'm so fond of, but one that has a special place in my heart nonetheless. As I sang along to Hark the Herald Angels Sing, I was moved by the lyrics more than ever before -- especially by the third verse.

Hail the Heav'n born Prince of Peace,
Hail the Son of Righteousness!


Light and life to all he brings,
Ris'n with healing in his wings.


Mild He lays His glory by,
Born that man no more may die.

Born to raise the sons of earth,
Born to give them second birth.

Hark! The herald angels sing,
"Glory to the newborn King!"

THAT, my friends, is exactly what Christmas means to me. And since I couldn't possibly say it any better than that, I'm just going to leave you with a simple

Merry Christmas!

May you enjoy this season, whatever it means to you.


Light and love,
The Livingstons

Thursday, December 23, 2010

December 2010 Newsletter: 16 months

Dear Morgan,

It's been a crazy month, kiddo. A month that began with me over a hundred miles away in the hospital for two weeks and will end with five (count 'em, five!) family holiday parties within a three day period. It's been so crazy, in fact, that I thought I might not write a letter this month. But then I read through some of what I've written in previous months and realized that there is already so much I've forgotten; little things that would have been gone forever if I hadn't taken the time to write them down. And so, while this may not be the longest or most eloquent letter I've ever written, there are a few things I wanted to be sure to tell you.  


First of all, I think you should know that I missed you terribly while I was away. In the days leading up to my hospitalization I spent a great deal of time just staring at you, memorizing your features once again: your chubby cheeks, your miles long eyelashes, the way your hair curls at the nape of your neck,  the dimple in your left cheek that only appears when you smile just so. The first time I was away from you was when you were three months old, and I remember thinking it was the most difficult thing I'd EVER done. I told myself  that as you got older, being separated from you would get easier but Morgan, I couldn't have been more wrong. It hurt just as much this time as it did the time before and I image that it will always be hard, regardless of your age. You are so very much a part of me, I honestly don't know what to do without you. As much as it hurts, I must say that I consider myself lucky to feel that way. It wouldn't be nearly as painful if I weren't fortunate enough to love someone so entirely. And that, my dear, is a beautiful thing.


Your dad brought you to the hospital on the weekends, and you were both able to stay there with me. You and I slept on the hospital bed, while your dad curled up on the pull-out loveseat. Those nights will forever stick out in my memory. You were exhausted - emotionally and physically - and you couldn't seem to get close enough to me. You'd wrap your arms around me and nuzzle your face deep into my neck and I wasn't allowed to move after that. If I did, you'd cry and hold me tighter. It was only after you had fallen into a deep sleep that I could move into a more comfortable position. At one point during your first visit, I had to go to the bathroom but each time I'd walk out of your view, you would scream and throw yourself onto the floor. I finally took you into the bathroom with me, but you still cried. It wasn't until I pulled your right up onto my lap that you were content. So there we sat, face to face, smiling, peeing and being very much in love.


A big development this month has been the transition to your crib... again. There have been short periods of time here and there when you have slept alone, but for the most part you have spent the nights with your dad and I in our bed. While I was away, you slept in your cousin Ryan's crib and the night I got home you pointed to your crib and excitedly said "Nigh-nigh?". Part of me was heartbroken that you would actually ask to sleep on your own, but another part of me was so proud of you. You've been sleeping in your crib every night since then and, get this, you've even been sleeping in!  As much as I miss you being so close to me at night, I'm happy to know that you are comfortable in your own room.


Morgan, before I finish this, I want to say thank you. Thank you for loving me. Thank you for missing me while I was gone. Thank you for enjoying the snow so much and making me think that maybe, just maybe, it's not so bad after all. Thank you for grabbing my hand, pulling me to the Christmas tree and telling me it's pretty ("priptee"). Thank you for climbing into my lap and falling asleep while I do my treatments. Thank you for adoring Dixie the way you do. Thank you for singing to yourself in your crib before I come get you in the morning. Thank you for laughing so hard when we twirled around the living room singing "Let it Snow" the other night. Most of all, thank you for all the times you've made me look around and think this right here is all I ever wanted in life.


Merry Christmas, angel!

Love,
Mama

Monday, December 20, 2010

Sometimes

Sometimes I get emails asking if I'm okay -- I haven't updated my blog or posted on Facebook for a while.

Sometimes I get busy.

Sometimes I get tired.

Sometimes, especially after two week long hospitalizations, I just need to spend some quality time with my husband and baby girl.

And so, sometimes, I neglect my blog.

But I am doing very well, thanks for asking. I made it home from the hospital last week, safe and sound. I'm very happy to be home and I hope to update soon. 

Monday, December 13, 2010

Whatta view!

I can't say that I've been hating the view from my room.




Actually, there's not a lot I can complain about right now. I've been treated like royalty, I've met some new friends, I've had some amazing workouts and I'm feeling better than I have in months. Plus, they let me eat all my meals in bed!

Even still, I'm glad this stay is coming to an end because as cool as the view from my room has been, there's one at home that I enjoy even more.


Maybe I am sick

In order to cure some of my boredom here in the hospital, I've been watching twelve consecutive hours of America's Next Top Model walking around a lot. To make the most of those walks, I've been opting to take the stairs instead of an elevator. Apparently, that's pretty unusual. Earlier today, my nurse and I had a conversation that went a little something like this:

"Are you feeling okay?"

"Yeah, I'm fine. I just took the stairs so I'm a little out of breath."

"The stairs?"

"Yeah."

"You know there are elevators, right?"

"Yep."

"But you choose to take the stairs?"

"Uh, yeah."

"You are a sick individual, honey... and it's got nothing to do with your lungs."

Thursday, December 9, 2010

Thankful Thursday (hospital edition)

I recently did a post about things I am thankful for, but in this particular setting (the hospital) I have become more acutely aware of my gratitude for some things I failed to mention in that post, so here goes... Thankful Thursday, hospital style.



1) I am thankful for the continuing advances in medicine and technology. When my oldest sister was diagnosed, CF was a "childhood disease". Meaning that people who had it just weren't expected to live past childhood, period. Now, the average life expectancy of someone with CF is 37 years. I currently have a neighbor down the hall who is in her late 50's. With all the treatments and medicine available, and with so many awesome people dedicated to researching and finding a cure, that number will just keep increasing.

2) I'm thankful that I have insurance to pay for the things I mentioned above. When $6,000 of medicine (for one month!) comes down to about $60 in copays, I really can't complain too much.

3) I'm thankful for the people who have made a career of helping others: doctors, nurses, surgeons,  respiratory therapists, etc. These people are nothing short of AMAZING!

4) I'm thankful that I've had especially great nurses and aides this stay. They have been competent, friendly, kind, and the bet I have with one of them about my PFT's is really motivating me to kick some booty in rehab.

5) That's another thing I'm thankful for -- rehab. Over the past several months, I've been limited on what physical activites I could participate in because of my achilles tendon injury. Well, it's finally healed enough that I can get a decent workout again, which is awesome! I've been alternating between a brisk walk on the treadmill (1.7 miles yesterday) or about 30 minutes on the NuStep. It's been great for my lungs and it's helping rebuild muscle I lost due to the injury.

6) I'm thankful to have not just one great doctor, but an entire team of them caring for me through this stay.

7) I'm thankful for new friends and surprise visitors. Because my family is a two (or more) hour drive away, I don't usually get a lot of visitors when I'm inpatient. This time around, however, some friends of my sister's who live here in Salt Lake have been stopping by with their two adorable little boys to keep me company. I thought it might be a little awkward the first time they came, since I don't really know them, but it wasn't awkward at all. I feel like I've known them forever, and it's been so nice to have visitors! (Thanks, Holly and Evan, for keeping me sane.) My cousin also came to visit recently and, although she hadn't planned on it, she ended up staying the night with me. It was really fun to catch up and get some much needed Niki-Time. I love me some Niki!

8) In the hospital, more than ever, I'm thankful for showers. Enough said.

9) This one might sound a little strange considering the fact that I've spent a great deal of the past week in a hospital bed, but I am so thankful for my health. Things could be A LOT worse than they are, and I am very blessed to be as healthy as I am.

What are you thankful for?

Monday, December 6, 2010

I came here to live

Please ignore the freakish way my neck is craned in this picture, and get a load a' her precious baby blues!

This past weekend was great! As far as days spent in the hospital go, the past few have been some of the best I've ever had (ranking right up there with Tae-Bo parties and avocado masks at Primary Children's).

Adam and Morgan spent Saturday and part of Sunday up here with me. In order to keep Morgan entertained, we walked (and walked and walked) around the hospital. Morgan loved the tunnel that leads from the U of U to the Moran Eye Center/Primary Children's Medical Center, and she simply couldn't get enough of the Christmas tree that stands in the lobby on the main floor.


Getting out of my room was refreshing. Adam's arms were comforting. But the best part of their stay was when Morgan wrapped her arms around my neck, snuggled into me, and we fell asleep together; Mama and baby, chest to chest, breathing each other's breath. For a minute, it felt like home.

****
The other day, I was talking with a social worker and she said something that really resonated with me. It's a concept I've thought about time and time again, but I really liked the way she worded it. She said that, in her experience, she's noticed that most CF patients fall into one of two categories: those who are living their lives and just happen to have CF, and those who have CF and just happen to be alive. Very simply put, but still... pretty deep.

The idea of dying is in the back of my mind, somewhere, all the time. I mean, I lost a sister to the same disease that I'm fighting -- obviously I have always known it has the potential to claim my life as well. But, I remember clearly, the first time that thought held any gravity -- the first time it became REAL --  was when I fell in love with Adam. I knew I wanted to marry him, but I seriously questioned the fairness of letting him love me if I was going to die before we had a chance to make a life together. How could I put him through that?

Another time the thought of death seemed palpable was when I was in the IMCU last year, unable to walk or even get out of bed on my own, struggling to breathe, wondering if I'd wake up the next morning. I remember thinking is my daughter going to be left motherless? How will my husband cope with the loss of his wife and the responsibility of caring for our three-month-old on his own? What have I done to them? 

**** 

I recently learned of the passing of a friend of mine. She was 22 and had cystic fibrosis. We read each other's blogs, became friends on Facebook and regularly exchanged emails. One of the last emails she sent me detailed how well she was doing; she was excited to share with me that she and her fiance had begun talking about having children. She was completely fine, and the next thing I knew she was gone. I was shocked, angry, resentful; I cursed this disease that is so unrelenting. It wasn't until the next day that I learned that she had died, not from CF, but in a terrible car accident. A car accident!

There are just no guarantees; life is so fragile. I have a terminal illness, yes. I may lose my fight, it's true. There is a very real possibility that I may not have as many years as I'd like because of this disease. But, I could also be hit by a bus tomorrow. I can't imagine letting opportunities pass by, withholding my love, or selling myself short because I may not live to see tomorrow, when in reality, nobody is guaranteed a tomorrow. I mean, if anything, isn't the possibility of a short life even more reason to seize the moment... to find what you're passionate about... to really live?  

****



After a tearful goodbye, I watched Adam and Morgan disappear into the parking garage. As I began the walk back to my room, I stopped to take another look at the Christmas tree Morgan was so enamored with. As I stared at my reflection in an oversized glass ornament, I thought again of what a wonderful gift this life is. If I'd let my fears about death and this disease govern my decisions, I'd have never experienced just how beautiful it can be. If I had been to afraid to live, I'd have already lost my fight. 

****

 I choose to LIVE MY LIFE, I just happen to have CF. What about you?

Friday, December 3, 2010

The good and the bad

The good news is: I've been sleeping incredibly well since I got here; better than I've ever slept in a hospital. The bad news is: I slept right through rehab yesterday.

The good news is: The pseudomonas that has made itself at home in my lungs is still susceptible to more meds than it's resistant to. The bad news is: I'm now culturing MRSA as well.

The good news is: Adam is bringing Morgan up tomorrow, and they'll both be staying the night with me! The bad news is: I'm not sure how easy it will be to keep a 16 month old entertained within my hospital room.

The good news is: The phlebotomists have been absolutely incredible this stay. I literally slept right through a blood draw the other night. The bad news is: My PICC placement was a pretty traumatic experience, and my entire upper arm is still extremely sore.

The good news is: The antibiotics haven't completely squashed my appetite as they so often do. The bad news is: Even still, I've lost 2 pounds since Wednesday.

The good news is: My nurse was kind enough to find a razor for me (since I forgot mine at home and didn't want to spend $6.00 on one from the gift shop). The bad news is: The razor burn it gave me is making me wish I'd just gone au natural.

Wednesday, December 1, 2010

On this, that, and meeting a legend

The Hole, The Joint, The Clink (one of my personal favorites)... call it what you like, I'm in it.

It's no surprise as I've been feeling increasingly ICK! over the past several weeks; there have been some good days, but mostly just okay days, with a handful of downright nasty days thrown in there, too. It's not a dire situation, but it's definitely time to do something. I'm trying this new thing (for me) called preventative care. As in, DON'T wait until you're on your death bed to take care of things. Apparently, it's all the rage. I'll let you know how it works out.

Lung function is down. A little more than I expected it to be, even. But I'm still feeling okay; optimistic that we caught this in time!

I'm not going to lie, the next two weeks aren't going to be fun, but they are going to be productive. The plan? Well, other than nonstop partying for fourteen days, of course, I'll be on continuous IV antibiotics along with an oral antibiotic. I'll do respiratory therapy four times a day and glorified exercise pulmonary rehab once a day. I think that's a pretty normal hospital routine for most CFers, except I have a secret weapon in my arsenal that few others do:


Okay, okay, so I don't actually think that pudding and coke hold any kind of special healing powers, but I got into my room late enough that I didn't get a dinner tray. By the time we figured out I wasn't going to get one, the cafeteria was all but closed, so this is what I ended up having for dinner. Hoping for better luck tomorrow.

I didn't get a PICC today, either. I'm told it will happen sometime tomorrow. Also on the schedule: a sinus CT scan. I warned you about all the partying, didn't I?

I'm going to keep this short tonight. I'm hoping to get at least some sleep before someone comes in to poke me with a needle again (today's count so far: 3). But one more thing before I go: you know how they say that meeting a legend is disappointing? Something like the person is never as cool as you make them out to be in your mind? Well, that's poppycock, I say! Why? Because a) it's just a neat thing to say. Poppycock! Go ahead and try it. I'll wait....

...See. Fun, huh?

And b) I had the pleasure of briefly meeting the gorgeous Somer Love tonight and she is EVERY BIT as adorable as I'd always imagined she'd be!