Saturday, May 21, 2011

CF in the News

1. FDA Clears Fast MRSA Test:

2. From clinic to catwalk: Cystic Fibrosis patient becomes top model after talent scout spots her at hospital:

3. The Faulks left the life they knew on a life-saving mission to help find a cure and control for cystic fibrosis:

4. What's Bitter to Taste Might Ease Tight Airways

5. Synteract and Mpex Pharmaceuticals Team Up for Cystic Fibrosis Walk and Cure:

6. Triathlon on woman's bucket list:

7. Babies' blood tests can end in false-positive screening scares:

Friday, May 20, 2011

Gopher's and Cystic Fibrosis: Part II

Continued from Tuesday's blog...

On Tuesday I talked about the problems that are going on in my garden. To recap, in case you didn't have a chance to read Tuesday's blog (which can be found here), I had a gopher that was slowly making his way through my planters and garden eating everything in his path. It started out simply not knowing what the problem was, but as soon as I figured out that it was indeed a gopher I hesitated to react. At first I hesitated because I simply didn't know what to do, but after some research and figuring out exactly what to do, I still did nothing. This went on for a handful of days as I basically waited for the gopher to make his way to the largest part of my garden - the part full of strawberries, zucchini, cucumber, tomatoes, onions and a variety of herbs. I knew the time was coming when I would go out and find my garden completely destroyed, yet I did nothing.

Towards the end of Tuesday's blog I hinted at the fact that I thought the story had a lot of parallels with the CF life. Specifically, I think the story has a lot of parallels with some seasons in my CF life. I asked you all if you saw any similarities or parallels between the story of the Gopher in the garden and the CF life and a few of you gave some very good answers. In fact, there were some answers that I hadn't even thought about. I found it especially interesting to see which answers came from CFers in the community, and which answers came from parents in the community. It makes perfect sense why they would be different. It's certainly not too late for you to read Tuesday's blog and tell me what you think.

The purpose of today's blog, however, is to tell you what I think and how I think it relates to my CF life.

Let's get one thing out of the way, I've been far from perfect in navigating this life my entire life. There have been seasons that I have done really well for a really long time and there have been seasons that I've done very poorly for a really long time. There have also been blips along the way where I stumbled for a couple of weeks or conversely I was "on fire" for a couple of weeks. It is important to realize that although we all have a different story, many of us travel the same path for at least a little bit of the time. And just like the different answers and responses I got to Tuesday's blog, I may interpret the story an entirely different way as it relates to my life.

There have been times in my life when I knew exactly what I needed to do to give myself the best shot at being healthy, yet I did nothing. My parents, doctors and friends would tell me exactly what I needed to be doing (ie treatments, exercise, tuneups). However, even though I believed them, I acted as if I did not. I'm convinced looking back at all of the times I said, “treatments don't help me” or “exercising isn't worth it” that I was using it as a defense
mechanism. The bottom line was I simply just didn't want to do those things. I had the ability, the time, and the resources to take care of myself. I just simply chose not to. The crazy part is that I knew I was getting sicker, that I was feeling different (and not in a good way), and yet it's like I was waiting for it to get “bad enough” for me to do anything about it. I knew that they were all right and what they were saying was exactly what I should be doing, but at the time I just felt like they didn't “get it”.

The problem with how I handled those instances is that every time I allowed my health to get “bad enough”, I suffered for it. Take, for example, the summer between eight grade and my freshman year of high school. I spent all of my time with my friends having sleepovers, hitting on girls and preparing to be a big, bad, high school student. I certainly felt invincible, and was too "busy" to do my treatments. My doctors knew how important the upcoming football season was to me and stressed that I should buckle down on my treatments and take care of myself in order to be successful in the upcoming season. But I ignored them. In the back of my mind, I knew they were right, but I was having too much fun "living life" (as I said) to be bothered with doing everything they said I should do. Well, the end of summer came, and instead of heading out onto the football field, I had to go to the hospital for 10 days and missed the first football game - a game I had worked for, and looked forward to, my whole life.

Point is, even though I knew that not putting my health first would ultimately cost me, I still made the wrong decision. But all it took to snap me back into reality was missing that first football game. I remember getting phone calls from my teammates to my hospital room after the game and feeling a deep sense of regret. What if I would have put my health first that entire summer and not my friends or what I thought of as "life"? What if I would have given up just one hour a day to completely devote to my health? Would things have turned out differently? Of course I'll never know the answer, but I can say with confidence that putting my health first would have given me the best shot at playing in that game.

This scenario also wasn't just isolated to 1993. As I got comfortable and the harsh lesson wore off, I would slip back into non-compliance - sometimes for a long period of time and sometimes for a short period of time. But in those times I slacked off, just like that gopher, CF wasn't taking any days off. Just like that gopher, CF was going to continue on its mission. And it wasn't until there were consequences and lessons that I would intervene.

There are always consequences to my health and my life if I chose not to do anything to fight my CF, just like there are consequences in my garden if I don't do anything to fight off that gopher. So now I challenge myself each day to fight that dang "gopher," show it who's boss, and I will win. The fruit in my life is much sweeter and much richer than anything I can grow in my garden.

Wednesday, May 18, 2011

Thankful Thursday - Peace Offerings & Funky Bugs

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for "peace offerings". Whenever Ronnie and I get into an argument or bicker, we never allow ourselves to remain angry long. In order to break any lingering tension (generally moreso on my end than his - he's a lot better at letting things go as soon as an argument is over), one of us will offer the other a "peace offering". "What is a peace offering?" You may ask. It's anything you want it to be. Normally it's whatever is within reach; a pen, a pillow, the others cell phone, it doesn't matter. One of us just hands the other a random object and says, "peace offering." It pretty much always makes us both smile and that's the end of it. After a minor spat last night, I was thankful for the quick and easy tension cutter that is the peace offering. How's that for a little scary insight into our relationship? Give it a shot works!

I'm thankful for quick recoveries. Ronnie and I came down with a funky stomach bug on Tuesday, leaving me with a super upset stomach and diarrhea (sorry, hope you didn't just eat!) and him with achy joints, an upset stomach and a headache. But luckily when we woke up yesterday morning we were good as new. I am so thankful that our ailment didn't linger!

I'm thankful for new workouts. Ronnie found us a great new lifting plan, and boy oh boy does it make for some sore muscles. Now, I'm sure a few of you read this and are concerned that I'm pumping iron, but have no fear, I've lifting WAY less than usual and just increasing the reps. I'm thankful that we have been able to get into the gym and not only do cardio but lift as well. It always feels good to wake up with sore muscles, as it's the proof of hard work!

Ronnie's List:

I'm thankful for the incredible scene of the sun piercing through the storm clouds that I saw today. I've always been one to appreciate the sunsets, rain storms etc, but I've always really loved that "sky opening up" thing that can happen amongst storm clouds. I remember when I was younger my friends and I would comment that Jesus must be descending from Heaven :)

I'm thankful that I got a crack at the gopher in my garden today. Early this afternoon I walked out into the garden to see that the gopher had been at it again and had now made his way into my tomato plants. Just when I noticed that he had also started a mound of dirt near the strawberries is when I saw his little sneaky head pop out of a hole. I ran to Home Depot yesterday to get some "gopher control" (aka gopher killer) and I enthusiastically grabbed it when I saw the hole he was coming from. The rest is history...I hope.

I'm thankful for phone reminders. If it wasn't for my phone beeping at me in order to get my attention of an event I had scheduled (ie taking out the trash), I don't think I would remember a single one. I have a notoriously bad memory that gets virtually non-existent for the "non-important" stuff. The problem with that is I don't consider much to be important. Good thing I have this Blackberry to keep my life in order.

So, what are you thankful for today?

Ring Test - Baby Gender Predictor

I know I was supposed to finish up Tuesday's blog, but I've come down with some weird stomach/body virus that is really wrecking some havoc around here. Mandi started feeling sick this morning and thought it was morning sickness until I started feeling a bit queasy. It got worse as the day continued and now has turned into a full fledged body attacking virus. My joints ache, I feel like I'm on the verge of throwing up and I can't wait to get to bed. I apologize for not finishing up Tuesday's blog, but I do promise to get to it soon.

In response to some comments on Monday's blog about finding out the gender of our little peanut, we've decided to put some of your suggestions to the test. A few of you suggested trying "The Ring Test" to determine the sex of our baby. For those that don't know. you're supposed to hold a wedding ring that is tied to a string above your pregnant belly. If the ring rocks back and forth in a straight line, it's a girl - if it starts in a circular motion, it's a boy. So, what do you think our ring did???

**Edit - Apparently Mandi is supposed to be lying down for the ring test. Whoops :)**

Tuesday, May 17, 2011

Gophers and The CF Life: The Similarities Are Astounding

For the past couple of weeks I've been playing a cat and mouse game with a critter that is getting oh so close to my garden. Before I get too deep, let's start from the beginning, let's go back in time about 2 weeks...

So I walked outside (to the side of my house) to some above ground planters, that Mandi and I planted cucumber and zucchini in, in order to do some pruning. I noticed that some dirt had been kicked up and the cucumber plant just looked a bit "off". At this point I thought that it was possibly the wind that had kicked the dirt up and shifted the plant enough so that it looked different. I went about my business and pruned both plants.

The next day as I was walking to my trash can, by way of the planters, I noticed that the cucumber plant was now a bit smaller (and not a result of my pruning). As I investigated further, I came to the conclusion that some bugs must have gotten into the plant and started nibbling away. I then brought out the bug spray and gave it a good dousing.

Then two days later when I was putting some recycling in the bin, I noticed that the entire cucumber plant was now gone! My first thought was that my neighbor was playing some sort of joke on me to be honest with you. Due to my very green thumb, I couldn't come up with many more answers other than bugs or pranks. That's when I noticed a mound of dirt about 5 feet away from the planter. Now, I'm no expert, but at this point I figured that there must be some critter making holes in my yard and then proceeding to eat it's way through my vegetables. I then noticed a very tiny hole in the dirt of the cucumber planter that after digging it up found it to be a much bigger hole. I didn't however see any critter.

The next day I noticed a new mound of dirt in-between the cucumber planter and the zucchini planter. Ok, I thought, this needs to be handled. I didn't want to lose my zucchini plant like I did my cucumber plant. Knowing that things were progressing with this little rat, or whatever it was, I new that I needed to kick my butt into gear. But it didn't. Could have done something that night, but I didn't. You can probably guess what I walked out to the next day.

Yup, the zucchini plant didn't look as vibrant as it did the day before. The dirt had been dug up and the leaves were already starting to wilt. I reached down, grabbed the plant and up it came. Not a root in sight. The little bugger actually ate all of the roots to the plant but had not yet made his way to the leaves or zucchini. I put the plant back down to grab Mandi and showed
her what had happened. After she checked out the damage and headed back in, I stood by the planter to decide what step to take next. It was then that I looked down at the hole this dude had dug and noticed his stupid nose pushing dirt literally 6 inches from my foot. Looking back, I wish I would have grabbed a shovel and done my best to "find" him with the end of it. I may have been able to take care of the problem right then, but I didn't. Instead, I picked up the zucchini plant and hastily tossed it into the trash can.

Then for the next week, I talked about how this critter, gopher to be exact, was making his way through my garden. I rehashed the story at least a dozen times and each time ended it with what I needed to do. See, by this time, he had moved on to another planter which is only about 10 feet from my main garden. I knew that I had to act in order to save the "prize" of my backyard. But, I didn't. Instead, I just talked about options. I told people who would listen that I really didn't know what to do. I mean, I knew something had to be done, but just what had to be done I did not know. I sat idle and complained even though I new the future. I knew, based on this gopher getting closer and closer to my full garden, and the destruction that had been left behind, exactly what was going to happen. It wasn't a matter of if my garden would be destroyed, but when. Yet, I did nothing. At this point, even though I didn't know what exactly needed to be done, I should have done something, yet, I did nothing. In fact, I didn't attempt to do anything. It felt like I was waiting for my garden to be destroyed, to then figure out what to do. Almost as if the garden being destroyed would somehow make this threat more "real". By that point of course it would be to late.

I could've acted a few days prior, but I didn't. I could've acted when I noticed a big mound of dirt and my cucumber plant destroyed, but I didn't. I could have acted when I was holding a dead zucchini plant in the air, but I didn't. I could've acted as the gopher made it's way towards my garden and proceeded to do what was almost a certainty at this point, yet, I did nothing. So what was it going to take to make me actually do something to solve this problem? Not sure, but apparently it hasn't happened yet. I just hope by the time I decide to act that it won't be too late.

So what exactly does this have to do with CF/Treatments/Life? Well, what do you think?

To be continued on Wednesday....

Monday, May 16, 2011

Top Ten Reasons to Find Out The Sex

On Friday we posted our latest ultrasound video. Being 15 weeks, we thought we could possibly find out the sex, since with the right shot, you can take a really good guess at it. But as you saw in the video, our nurse went back and forth, initially thinking girl, then suspecting girl, and ending the appointment with her best guess, "boy...but we'll have to wait and see." Our IVF clinic is still giving us ultrasounds (just being nice) so we're going to sneak in one last one on Thursday before the baby doesn't fit on the screen, with the hope of finding out the sex.

We got a lot of comments on the video saying that being surprised was the way to go. And I felt the same way most of my life. I always thought I wanted to be surprised. In fact, when I played out my baby's birth I envisioned hearing "It's a ____" out of the doctor's mouth and being so shocked. However, since getting pregnant, my perspective as changed. I figured I'd put together my top 10 reasons for wanting to find out the sex. So here is goes:

1. I hate calling the baby "it". We call our baby Peanut as much as possible, but sometimes there are contexts where he, she, or it is necessary. And something about calling my sweet, precious, totally-loved baby "it" feels cold.

2. I constantly am running my own movies of the future, and having a gender would help my movies along. I want to know if I'm picturing a little boy playing with trucks and begging his daddy to play catch in the yard, or a little girl feeding a bottle to her baby and wearing around mommy's high heels (How's that for fitting your child into gender-specific roles? I just realized as I was typing that that I don't quite have to force my children into stereotypical roles. And I will say, a little girl of ours will be a complete tom boy...but these are my made up movies - so that's what I envision).

3. I don't want a gender-neutral nursery. The nursery is one of the best parts of pregnancy. You get to put together your child's space and make it a place that suits the baby, while still being a room that you'll enjoy in the wee hours of the night. I want a nursery that is perfectly-suited to a little boy or that is girly for a girl. Plus, I'm not that into yellow or green - two of the go-tos for gender-neutral nurseries.

4. Gender-neutral clothes are hard to come by. My friend recently had a baby and in shopping for her little bundle, I found that the girls' sections and boys' sections are huge, but you have to search high and low for cute gender neutral clothes. And being the advanced planner that I am, I know I will want quite a few outfits on hand before baby comes home.

5. Narrowing down the name game. We've started playing the name game since finding out we were pregnant. But we have a tough time narrowing it down to less then 5-10 names. Once we know the sex, we can really start to focus on just the boy names or just the girl names, and finally reach a conclusion. Otherwise, we're constantly churning names for both and I have a feeling we'll never get there by D-day.

6. Bonding. This one sounds a little silly, but I will say it anyways. Something about knowing the sex of the baby seems like it will help me bond while the baby is still in my tummy. When I feel Peanut kick, I want to be able to picture who it's coming from. It kills me that I have to wait another 6 months before actually seeing this little nugget's face, but being able to at least picture a little boy or girl helps - who knows why.

7. Hand-me-downs. We have cousins and friends who have kids of both sexes. And they are generous enough to pass down some things they're no longer using. However, it seems like our house could become a giant store unit pretty quickly if we're collecting both boy stuff AND girl stuff. And then, what do you do with all the stuff of the wrong sex? So knowing the sex will keep our selection limited at least by 50%.

8. Ronnie needs at least 6 months to prepare if it's a girl. Ronnie has ben very honest since the beginning that he wants a boy. "Why?" you ask. Because he knows that a little girl will have him wrapped around her little finger. So he needs some time to strategize how he will remain THE boss-man, while he would be melting inside when she simply looked at him. The joke is on him though, I think a little boy may have the same effect on him :)

9. I'm impatient. I LOVE surprises, but I have always had a tough time not peeking at Christmas gifts before their wrapped and under the tree. It's the same way with the baby. I want to be surprised, but I just can't keep myself from peeking!

10. Ronnie needs to plan exactly what the tattoo will look like on his bum...

KIDDING! There will be no tattoos in this household.

So let's hear it! Did I forget any reasons? Do you TOTALLY disagree? There's still time to change our let's hear what you've got!