Monday, February 28, 2011

February 2011 Newsletter: 18 months

Dear Morgan,

Let me start off by apologizing. Considering how your entire world revolves around Daddy right now, it might be upsetting to you that he isn't the one writing this. Sorry for that. You have recently fallen hopelessly and completely in love with your dad (hey, I can't blame ya). You want to be wherever he is, eat whatever he's eating, and do whatever he's doing at all times. I expected this to happen at some point, but I must admit that I'm surprised at how quickly the transition has taken place. A friend of mine once told me how she absolutely hated it when her baby started wanting Daddy more; it made her feel bad that she was no longer the favorite. Personally, I love this new behavior of yours. Not only is it super cute to see your dad with his very own Mini Me, but seeing how happy it makes you to just be near him and witnessing the pure love the two of you posses for each other is nothing short of magical. I've decided that being surrounded by this much laughter and love is all I'll ever need in life.

Oh wait, I take that back. Since you've become so enamored with your dad, I can actually step out of the room without you throwing a fit and/or following me, which means that for the first time in a very long time I've been able to use the bathroom ALL BY MYSELF. I'd forgotten how wonderful it is to poop without an audience. So I guess all I really need in life is laughter, love and some alone time in the bathroom every now and then.

 

Some things (besides Daddy) that you currently love: brushing your teeth, juice, blankets, begging for coins to put in your piggy bank, cheese, playing dress up (especially with Shylee's princess gloves and plastic high heels), being outside, doing anything we've specifically told you NOT to do, jumping (well, attempting to jump), singing and dancing, running (away from me, particularly), sneaking food out of the fridge, pointing to and saying the name of body parts, books, getting your toenails painted, climbing onto the back of the couch any time my back is turned for 2.5 seconds, making animal sounds (although in your world, everything roars - from lions to butterflies) and putting on/taking off your own clothes.

When you were a baby, still brand new to me, I'd sometimes have to fight the urge to wake you from your nap before you were ready, simply because I couldn't get enough of you. The stage you are in right now is so much fun that I've recently found myself fighting that urge again. There are days that I have to physically stop myself from waking you up because I miss you and just can't wait to see what funny thing you'll do/say next.


I've mentioned before how I had no idea that you would be so innately female, but you constantly surprise me with the things that you know and do that are pure GIRL. And it's not as if we've taught you these things; they're simply a part of who you are. You are dramatic and moody and you're already learning how to manipulate your dad into doing things, simply by being cute. You adore anything that sparkles. You love clothes and shoes, especially high heels! I don't know if I'm more amazed or embarrassed by the fact that, at a year and a half old, you can walk in heels far better than I can.


Morgan, I know that you know I love you. This is something I make a very real effort to show you every day. But something else I want you to know, that I may not do as good a job of showing you, is that I don't take you for granted. Parenthood can be hard and frustrating at times, and I joke about my experiences with you, but I want you to know that I do understand how lucky I am to have you. I think the trials we'll face as your parents and all the sacrifices we'll make along the way are fundamental components of this adventure. As much as I love our fun times, I want you to know that I also appreciate the not-so-fun times because it's during the struggling that I grow and learn the most. There is so much about myself I didn't even know needed improvement until you came into my life and challenged me to become a better version of myself. Having you, more than anything else in my life, has helped me begin piecing together the puzzle of what it means to be a good person.


And so I will say again, I do not take my role as your mother lightly. I do not take this incredible blessing for granted, and most importantly, I do not take YOU for granted. Some people say that you never truly appreciate what you've got until it's gone, but I'm telling you that isn't always the case. I know exactly what I've got and I thank God for it -- for you -- every single day of my life.

Love,
Mama

Friday, February 25, 2011

VX-770

To some of you, those numbers and letters mean absolutely nothing. For a few of you, those random numbers and letters may change your entire future.

VX-770 is a medication for people with cystic fibrosis that has produced incredible results in Phase 3 clinical trials. It is the first medication of it's kind, targeting the actual gene defect rather than simply treating the symptoms. Revolutionary, life-changing and miraculous are all words I've heard people using to describe this drug.

Only about 4% of the CF population has the specific gene the VX-770 targets (G551D). I am not part of that 4%, but this is still HUGE news. It is an enormous leap forward; a stepping stone to a drug that will someday help everyone with CF, and it is one step closer to a cure. I'm not one to get all giddy when I hear about most drug trials, and hearing "a cure will be found in the next few years" gets old after hearing it for 15+ years. But you guys, there is proof backing this up. IT'S WORKING, and that is something to be excited about!

A couple articles about VX-770:

http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/2-23-Phase-3-Study-VX-770-Shows-Positive-Results.cfm

http://prescriptions.blogs.nytimes.com/2011/02/23/vertex-says-cystic-fibrosis-drug-helped-patients-breathe-easier/?hp

Thursday, February 24, 2011

Under construction

Please bear with me over the next few days while I try to find a new blog layout I'm satisfied with.

Tuesday, February 22, 2011

OMG ur speling sux

I have to say, I'm a huge fan of texting. I love how quick and easy it is, not to mention how conveniently wonderful it is to have an entire conversation with someone without actually having to hear them speak. My issue with texting is this: I don't understand half the crap the kids are saying these days.

(I realize that makes me sound much older than I am. I've also recently developed a taste for liver, and if I had my way I'd be in bed by 9:00 each night, so maybe I really am old.)

It's not as if the people who text that way are dumb. I recently had a text conversation with a very intelligent friend of mine, who is far more educated than myself, that went a little something like this (blue is me, red is my friend):

?4U

I don't know what that means.

i have a ? 4 u lol

Oh... okay. What?

WUD 2 nite

Ummm... what?

wut u doin tonight lol

Not much. Why? What's up?

goin 2 C a moV u guys wanna come 

Does that mean you're going to a movie?

ya lol wanna come lol

And the conversation continued until I told her (10 messages and 14 LOL's later) that although I appreciated her offer, I was going to pass. I told her it was because we didn't have a babysitter but the truth is, the movie didn't even start until 9:00 and I was planning on being in bed by then.

It just seems like it takes so much more effort to spell things incorrectly on purpose. Especially when you are talking with someone as incompetent as myself and end up repeating everything you say. And the whole LOL thing? If there were an award for Most Overused Acronym, it would be given to LOL, hands down. It seems that everything warrants an LOL.

It's Friday! LOL!

My sister just got her driver's license. Stay off the roads! LOL!

Hi. LOL!

Can you imagine how creepy it would be if people actually laughed out loud as often as they type it? It makes me feverishly uncomfortable when someone uses LOL more than once in a single message. And when someone finds something especially funny, so they LOOOOOOL? Oh, just kill me now. I have never in my entire life laughed out out out out out out loud. In fact, I don't even know what that means.


The SINGLE good thing about LOL is the way it serves as a get out of jail free card every now and then. Like the way any uncomfortable pause in an instant message conversation can be filled with a random LOL. Or when you want to say something you probably shouldn't, as long as it's followed by LOL it's okay. For instance:

Anonymous: I can't believe you actually said you think your child is evil. Parenting can be hard, but you shouldn't take any moment with them for granted.

Me: I appreciate your input, and I really do make an effort to appreciate every moment with my child. But what I'd appreciate
even more is if you'd go ahead and bite me, you bitter hag. LOL!

In fact, LOL may not be such a bad thing after all. Can you imagine how awesome it would be to LOL your way out of real life situations? To be able to tell people, I know I sound like a complete jerk, but I'm totally LOLing inside.

Hmm... I may be onto something here.

LOL!

Tuesday, February 15, 2011

Shocked that you would even suggest such a thing

For the past couple months, a couple nights a week (after Morgan is in bed), Adam and I have been watching old episodes of Grey's Anatomy while I do my evening treatments. I've watched it here and there over the past few years, then we caught most of season six last year and decided that we both really enjoy it. What we've been doing the past little while is playing catch up on the seasons we missed.

As par for me when I really get into a show, I've become emotionally invested in and hopelessly addicted to Grey's Anatomy. In fact, the nights we watch it together have become my favorite nights of the week (yes, I am pathetic). I've become so involved that I've begun to expect my own life to mirror the show, and I'm confused when things don't happen accordingly. For instance: Yesterday, when Adam and I were at the hospital, we were led through this long, empty hallway and into a tiny little room in a remote area of the hospital. Once we got there and were left alone, I had a hard time understanding why Adam wasn't throwing me into one of the chairs and making out with me. Because that's totally what Mark Sloan would have done. And it would have been oh-so-McSteamy.

Mmm... McSteamy.

Okay, I don't know how I really feel about the whole "McDreamy vs McSteamy" thing. I mean, calling them that is just objectifying these men, which isn't really fair or morally right. It just seems so shallow to imply that someone might watch a TV show simply because the cast is so freakin' gorgeous. The thought just sickens me.

And now, something totally unrelated: I thought I'd share these pictures I found of some incredibly sexy people. I think they're, like, on a TV show or something. It doesn't matter 'cause they're hot.
Eric Dane as Dr. Mark Sloan

T.R. Knight as Dr. George O'Malley




Jesse Williams as Dr. Jackson Avery

Eric Dane- "McSteamy"
Patrick Dempsey as Dr. Derek "McDreamy" Shepherd

Justin Chambers as Dr. Alex Karev


You're welcome for that.

P.S. I think every post of mine from here on out should include at least one shirtless photo of Eric Dane. No? Fine then.

I heart Valentine's Day

We honestly aren't huge Valentine's Day fans in our house. That's not to say that we dislike the holiday; we get the girls a little valentine and we really enjoy the abundance of chocolate (especially when it's discounted 50% the day after the holiday) but it's basically just like any other day for us.

Yesterday I worked for a few hours, then dropped Morgan off at my mom's and went with Adam to his pre-employment physical. The mine requires that he get checked out by a doctor of their choice before he actually starts work. From what we'd heard, we expected a urine test and a quick "turn your head and cough" (which is either strangely sweet or incredibly creepy on Valentine's day -- depending on how you look at it). It actually turned out to be an extensive exam, including several different tests at three separate locations. We started at the family clinic where he had an eye exam and a basic physical exam which, sadly, consisted of absolutely no inappropriate touching. Adam couldn't have been happier about having his boy parts left alone, but I have to admit I was a little disappointed. I wanted him to get just a little taste of what it was like for me to have half the people in the county put their hands in my lady parts while I was pregnant. Is there no justice in this world?

After his physical exam, we went to a hearing center for, well, a hearing test (just in case you didn't gather that from the words "hearing center"). Turns out, Adam's hearing is nearly perfect which just goes to prove that he really can hear me asking him to take the garbage out.
 
The last portion of the physical was pulmonary testing, complete with a chest x-ray and albuterol treatment. I do PFT's on such a regular basis that I don't even think twice about it, but it was really strange for me to see Adam in the hot seat. I was interested in comparing our lung function, so I asked the technician what Adam's FEV1 was. She looked at me like I was INSANE. She honestly couldn't tell me and explained that all their tests had to be sent to Utah Valley Hospital to be read by a pulmonologist. So after she gave us a print out and we left the room, I took a look at his numbers and quickly calculated his percentage. The hospital will be receiving a bill for my services.

Three hours after we started his "physical", we were finally finished. And starving. We decided to stop at KFC for a quick bite before heading back to pick Morgan up. And as we sat there eating together I realized we were having dinner. ALONE. On Valentine's Day. I mean, you could even go so far as to call it a date. It was kind of nice, actually. Earlier in the day I joked on Facebook about how nothing says I love you like "turn your head and cough". The truth is, nothing says I love you like a bucket of fried chicken and holding hands in the car on the drive home.

Friday, February 11, 2011

Chuckie


I hope you don't judge me too harshly for saying this, but sometimes.... sometimes I think my child might be the spawn of Satan.

She's also fallen victim to this cold I've had, so she hasn't been sleeping well lately. Last night she slept with Mom and Dad (which is something she rarely does anymore) and it really seemed to help her; she slept soundly for most of the night, which means she woke up happier than she's been for days. I, on the other hand, hardly slept at all. I couldn't shake the feeling that at some point I'd roll over and see that face staring at me.

Wednesday, February 9, 2011

Oh happy (sneezy) day



So I've been feeling a little off for a couple days, like I might be getting a cold (yes, again!). At first it was just like hey, I'm a cold. No big deal. Then last night it suddenly went from hi, how are ya? to  pay attention to me, WOMAN!

First of all, that's just rude. Second, I don't have the time or energy to deal with another cold right now.

So I took some NyQuil and went to bed early, hoping that by morning it would calm considerably and I could go back to ignoring it. But when I woke up this morning it was all like get these MOTHER F***IN' SNAKES off this MOTHER F***IN' PLANE! and I knew I was out of luck - this cold is here to stay and it refuses to sit quietly in the corner.

My entire head is throbbing, my throat is on fire, I cannot stop sneezing and due to the massive amounts of Emergen-C I've been drinking, I've peed 36 times in the last 45 minutes. And another thing, who knew the human body could produce THIS MUCH snot?

I'm not asking for your sympathy. Really, I'm not. In fact, all of that has nothing to do with what I was planning to post about.

All I really wanted to say is that today has been a gorgeous day! I mean, did you see today? I can't put my finger on what specifically made it so beautiful, except maybe the fact that I actually felt warmed by the rays of the sun -- in Utah, in February -- if even for just a brief moment.

Granted, I was sitting in my car (with my heater on) and the sun was just shining through my window, but it still totally counts in my book.

Whatever the reason, I'm so full of light and love today that nothing -- not even the mountain of dirty dishes in my sink or a cold the size of Samuel L. Jackson -- can get me down.

So if you're in need of a little extra happy today, feel free to borrow some of mine. As long as you don't mind a little snot with it.

Tuesday, February 8, 2011

Some pretty awesome news

No, I'm not pregnant. Why is that the first place everyone goes? The good news is that Adam got a new job! In a little less than two weeks, I'll be livin' the life of a coal miner's wife.


The thought of him being a coal miner scares the bejeezus outta me, but the mine he will be working in has one of the highest safety ratings in the nation. He will be making more money... a lot more money (and I'm not ashamed to admit that the money is a huge part of this job's appeal. I mean that's why people work, isn't it - to bring home a paycheck?) but that's really not what it's all about for us.

Adam has been at his current job for seven years, and he's been mistreated (to say the VERY least) almost the entire time. I'm really biting my tongue here, because if I get into just how bad his work situation has been, I may end up saying some very regrettable things. He's basically been forced to stay in a crappy situation because 1) the economy 2) the fact that we live in such a rural area and jobs are incredibly scarce, and 3) he was able to get health insurance there, which is a NECESSITY for us.

Even still, there were several times things got bad enough that he was ready to quit (being laid off on Christmas Eve one year and Thanksgiving the next, being lied to and disrespected, being told more than once no, you can't take your wife to the hospital or you'll be fired) and I can't say I would have held it against him if he'd just walked out. If he weren't so darn responsible, he'd have given up and quit years ago. The fact that he's stuck it out for our family's benefit is one of the qualities I love most about him. (Don't laugh. Responsibility is totally sexy. If you don't believe me, try being with someone who won't get a job and leaves the toilet seat up all the time. You'll be calling me up within a week to ask if my husband has any responsible brothers you can hook up with.) He's more than paid his dues, and it's about time he catch a break. Not that this new job will be easy... but at least it will be worth his effort.

This job will provide great benefits and a financial stability we've never had, which opens a bunch of doors that have been closed to us in the past. We'll soon be able to afford our house on our own; no more renting the upstairs out! Also, with the possibility of me being able to stop working (eventually... I love my job too much to think of quitting anytime soon) we can start talking to my doctors and exploring our options for future kids. I know, exciting right?

We're anxious for this huge change and excited to see what it means for our future. If you see Adam, go ahead and give him a HUGE high-five!

P.S. There's a song (by Sara Evans for you country music fans) that talks about seeing that special man walking out of the coal mine covered in dust, T-shirt tight, all muscled up. I'm not gonna lie, that sounds hot. And it might be kinda fun to be that wife who just can't wait to get him home, ain't gonna have nothin' but the supper on. Just sayin'.

Friday, February 4, 2011

Where do you draw the line?

I've had some pretty heavy thoughts running around in my head for a couple days now -- like a hamster running around in a rusty wheel, driving me insane with the incessant squeaking. I've been putting off writing about it, hoping the words would magically come together and manifest themselves on my computer screen. Needless to say, that hasn't happened and the wheel is still turning. It's time to kill the hamster.

--------


Some recent discussion in the CF community has really got me thinking: what does it really mean to be positive? Is it possible to be realistic without being negative? Is one person's undying optimism another person's denial? Where do you draw the line?

Or does it always have to be so black and white?

The word "positivity" gets thrown around a lot, whether in the context of CF life or life in general. We're supposed to remain positive in the face of adversity, always wear a smile and not let our circumstances get us down. But just like each case of cystic fibrosis is very different, so are the lives of people living with it. So it stands to reason that each person's interpretation of "positivity" is just as unique as their own story.

I'm generally a pretty positive person. More so than a lot of people I know, actually. I can put a positive spin on almost any situation, but I can also admit when something just plain sucks. And sometimes things do, sometimes they really do. I try to stay positive, focus on the blessings I've been given, and make an extra effort to appreciate all the beauty in my life. I try like crazy to push all the dark, negative thoughts out of my mind. But sometimes, all that trying is in vain and sometimes it JUST DOESN'T WORK. I get overwhelmed and tired of it all. I focus on the negative and stand back helplessly watching my fears about the future creep in and make themselves at home. Sometimes I do exactly what all those Eternal Optimists and Positivity Pushers warn against.

And do you what I do once I realize I've reached that point? I allow myself to feel that way. I don't get upset that I've lost my grip on those positive thoughts. I don't chide myself for being discouraged. I curl up in bed and cry for a while. I admit just how frustrated and scared I really am. I let my more emotional self take the helm and I feel whatever I need to feel for a while. My feelings are just that -- mine! I refuse to let anyone make me feel ashamed of them. I believe that when I allow myself those moments, after they have passed, I really do feel better. I'm able to reevaluate things with a clearer head and carry on with an awesome attitude again. I think that it's healthy -- no, NECESSARY -- to let ourselves visit "the dark side" every now and then. The trick is not to let ourselves dwell there too long.

The psychological aspects of a chronic illness (whatever it may be) are just as real as the physical ones. They may not be as visible or easily recognizable, but they are very present. I think it's important to understand and accept that. We need to be able to have those feelings and allow others to have them without judging or being judged for it. The current median predicted age of survival is 37 years. In other words, half of the patients currently on the CF registry are expected to live past 37 years. Half are expected to die before reaching that mark... half! That's not okay! My own sister died at the age of 14. She and my parents did all that they possibly could do, and she still died. I can do everything in my power to try to beat those odds, but the truth of the matter is that CF is a ruthless killer and I am not in complete control. I can't just sweep those thoughts under the rug. It's great to be positive and look at the glass half-full, but it's also okay to admit that it's scary.

"Ignore the statistics," some say. "They'll just get you down and they're not an accurate prediction of how your story will play out." While those statements (and others similar to them) are true, I REFUSE to ignore the statistics. I prefer to use them to fuel my fire. I want to be in the demographic that lives to 37... then 57... then 77, and beyond! Looking at the stats and acknowledging that I could easily fall into the other half makes me THAT much more motivated to kick CF's ass. Fully digesting the scary reality of my situation allows me to strategize, to plan for the worst and work my up from there. If you call that negativity, then so be it.


So, back to the original question, where do you draw the line? My answer: I don't think we have to. I don't believe it's a matter of black or white, realistic or positive. Rather, I think that life is a thousand shades of gray. Pick and choose what works for you. Change it up as you need to. And never let anyone tell you that what you're feeling is wrong.

Wednesday, February 2, 2011

I never promised you a rose garden

There's a story behind my new blog header... kind of a funny little story, actually. Well, you might not think it's very funny, but here it is anyway (first, you should probably know that my full name is Jennifer Rose).

It became apparent at a very early age that I was a bit bossy stubborn opinionated sassy headstrong  temperamental. I'm still that way, actually. My husband knows this about me, and has come to terms with it. You should too. (Sorry, it's the bossiness coming out.)

One day, when I was maybe four or five, my sisters and I had a CF clinic day. Those of you who have ever been to CF clinic know how lengthy those appointments can be. Well, take everything -- the doctor visit, the labs, the x-rays, the whole shebang -- and times it by three (me, plus two CF sisters) and you're in for ONE LONG DAY. I'd had a bit of a rough time and had been acting very, well... very much like  Jenny, as my mom would say.

There happened to be a student in clinic with the doctor that day and upon entering our room, the doctor (who knew me well) turned to the student and said, "And today you get to learn that life isn't always a bed of roses... sometimes it's a bed of Jennifer Roses."

And the saying just stuck. I can't count the number of times growing up that I was having a really hard time, being especially ornery, and my mom could get me to shape up (or at least get a smile out of me) simply by saying, "Life isn't always a bed of roses..."

Tuesday, February 1, 2011

Marriage is NOT for sissies


I can clearly remember a conversation I had a couple years ago. A young(er than me) girl I was good friends with at the time -- gorgeous, bubbly and devastatingly naive -- had recently returned from her honeymoon. She and her husband were just a few weeks into their blissful union and at the time I was more than an entire year into my marriage (not to mention Adam and I had been living together (yes, in sin!) for a year before our wedding, which is kinda like being married), so I felt as if I were just bursting at the seams with marital wisdom. My ignorance is astounding sometimes. Almost like a superpower, really.

As she flipped through the photos of her wedding and honeymoon, all carefully placed in  a couple of crafty photo albums she'd made, she said to me with a smile, "I don't understand why people complain about being married. We're having so much fun and we never fight. Married life is like... so easy."

I'm sorry, did you say easy? EASY? Even then -- still a newlywed myself, really -- I knew that married life is NOT easy. Marriage is hard work! Very satisfying and incredibly rewarding work, yes, but WORK nonetheless. I would even go so far as to say that if your marriage doesn't require a lot of effort then YOU'RE DOING IT WRONG!

It's not as easy as 1) meet your soul mate 2) fall desperately in love and 3) live happily ever after, the end. I don't for one second believe that fairytale scenario and I think that if you do, you're either high or crazy (either way, there are some days I'd like some of what you've got because, let me tell ya, it'd be easier than dealing with reality). I was once told by a very wise man (a.k.a. my dad) that "soul mates" aren't real. What is real is the commitment two people make to work at a relationship and to see it through to the end. I like to think that's exactly what Adam and I have agreed to do: to make a real effort to work through our considerable differences, to be understanding, to make compromises and to constantly work at staying in love.

That's not to say that we always understand each other (we don't), that we can always reach a compromise without one of us being disappointed (we can't), or that we never disagree about things (we do). I absolutely hate it when people say that they NEVER argue with their spouse. That same wise man who told me about soul mates (or, rather, the lack thereof) also told me that simply because two people never argue, it does NOT mean they never have reason to argue. It's more likely that one of them has agreed to be a total doormat for the sake of keeping the peace. I don't want to be a doormat, and I certainly don't want my husband to feel that he has to be the doormat. Therefore, we argue sometimes. I'm not afraid or ashamed to admit it: I ARGUE WITH MY HUSBAND.

I'm not suggesting that you publicly air your dirty laundry or that you discuss with people the details of your most recent knock-down, drag-out fight. Far from it, actually. I feel that involving a third party in your marital crap can be a huge mistake. Chances are that the two of you will work it out in the bedroom and you'll forgive him, but your mom (or sister or girlfriend) won't. They'll remember the incident forever and in the back of their minds they'll always think your husband is kind of a jerk. Ladies, please don't make your husband a jerk unless he REALLY deserves it (ie: he cheated on you or he squeezed the toothpaste from the top AGAIN). You'll get over it, but your mom never will.

I don't claim to know it all, not by any means. I understand that I still have a lot to learn about marriage. I embrace the thought, actually. I hope that in thirty years I'm still learning about marriage and continuing to grow my relationship with my husband. But I have learned a few things about marriage in the past few years: it's okay to be less than perfect, it's okay to get frustrated with your spouse, it's okay to argue and it's okay to admit that it's really hard sometimes. Those things do not make you a bad person or mean that you don't love your spouse as much as you should. In fact, I think that acknowledging and being able to talk about those imperfections might actually mean you're more secure in the knowledge that you really do love each other and are capable of working through things together.

07/21/2007
The entire reason this post was conceived is that I spoke with my old friend yesterday, the one who told me how easy it was to be married. I asked her if she remembered that conversation (she does) and if she still felt the same way. She laughed at first, but then she really thought about it for a minute before she finally answered. "I thought marriage was supposed to be easy" she said, "and I thought that if I said it enough, it would just work out that way. But trying to be perfect and trying to make it easy was exhausting. Things have gotten a lot better since I stopped pretending his shit doesn't stink."

Couldn't have said it better myself.