A Must Read

If you spend any amount of time with a person with cystic fibrosis, this is a must read. It should be mandatory.

MONDAY, SEPTEMBER 28, 2009

Caution: Harmful Fumes Ahead (for CFers)
On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.

I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:

-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.

-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.

-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.

-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.

These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.

Please visit www.runsickboyrun.blogspot.com to read the comments left. Very helpful information!

Five for Friday - Memories

Eight years ago today tragedy struck our nation. In some ways, it seems like this was just yesterday. In others, it seems like a lifetime ago.

1. I was in Anatomy & Physiology lab when a classmate told me what was happening. We were especially troubled since our college campus was neighboring Ft. Detrick. Our teacher clearly didn't understand the magnitude of the happenings. At first, she refused to dismiss class because she was concerned when we would make up the missed class but quickly relented when the administrator further explained.

2. Dear Husband and I were not Dear Husband and wife. In fact, we had only been dating for a few months. He was on vacation in Virginia, but drove up to Maryland to be with me. That was really nice of him.

3. On my way home from school, traffic was a mess. Phone lines were crazy busy. I didn't know where to go or what to do. I went home and noticed flags were already at half-mast.

4. Our church had a prayer meeting that night. I can't ever remember so many people showing up for a prayer meeting. I don't think I've seen so many show up since, either.

5. So many questions. So few answers. Such a moving day. Eight years later, still sobering.

In remembrance of those lost in connection with that day...

Thankful Thursday

Well, I've just about missed Thankful Thursday. But it's never too late to be thankful. So, here we go:

1. Applebee's Boneless Buffalo Wings (Why are my thankful items food?)

2. Munchkin Re-Usable Microwave Sterilizer Bags - Even though we are past the need for clean bottles, these bags come in very handy for sterilizing nebulizer parts.

3. My family and friends. They are the best support system and I appreciate them all.

4. My new (to me) MacBook Pro.

Let's go back.

Whenever I stumble upon a new blog that I think I might be interested in, I always like to find out how it is relevant to me. In an effort to make that easier for some new followers (welcome!), I'd like to start by giving a brief run-down on Samuel's story.

I suppose the best place to start would be at the beginning. Because I believe the beginning is before birth, I'll start there. You know what? I'll start with before conception because that's really where the story begins.

Dear husband and I had talked for a while about starting a family when we lived in Maryland. After going back a forth for a few months whether it was the "right" time or not, I announced that it was, indeed, the right time because I said so. Fast forward 1 year. We moved to Arizona. Hadn't used any form of birth control. Still no baby. No sign of a baby. Nothing. This shouldn't be. So I scheduled an appointment. We were just going to have some tests done. Without giving away everyone's business, and since this is the clean version, we were told sometime around Feb. 13 that we were welcome to keep trying but the chances of me getting pregnant the routine way would be very slim. Closer to none.

In a way, I knew this. I knew something had to be wrong. But, we figured it was in God's plan, so we took the news, took our options, and went home. We were going to pray and talk about our options and make a decision later.

The next weekend was my birthday and my parents were coming to visit, as we had moved to across the country a few months earlier. They may or may not have known of our plans, but we decided it would be a good time to tell them they might not be getting any grandchildren from us. They were understanding, supportive, and clear that whatever decision we made would be the best one. I remember my dad said, "You don't have to be a mother to be mommy and you don't have to be a father to be daddy." This difficult, yet easy, conversation took place on my birthday, Feb. 22, over dinner. It was a Thursday. Earlier that day, on a whim, and since babies were on the brain, I took a pregnancy test since it was about that time and I thought a positive test result would be the best birthday present ever! Of course, not surprisingly, the test was negative.

Friday came, but didn't bring my anticipated monthly visitor. By Friday night, I was getting a little suspicious. Saturday morning, when there was still no sign and officially late, I took another test. I was letting it "simmer" while I brushed my teeth. I didn't have my contacts in or glasses on my face, so as I was brushing (foaming at the mouth), I was squinting to see any results as they appeared. I thought I was going crazy so I called dear husband (DH) to come check things out. As fast as I could, I spit the toothpaste out of my mouth and scrambled to find my glasses while DH peered over a little stick. He said, "I don't know, E. It looks like 2 lines to me." Indeed. There WERE TWO lines on the stick and we were going a little nuts. My parents were still visiting. My mom had been asleep on the couch downstairs so we raced downstairs, waving the urine-soaked stick in the air. My mom quickly figured out what was going on. My dad, hearing the commotion, came downstairs but was a bit confused as to why we were all looking at a pink stick and crying. Finally, my mom explained what it was. Already, we had beat the odds. You can imagine a few weeks later, visiting the same doctor who had said "good luck" and making him eat his words. It was a great feeling.

Pregnancy was smooth. We opted for no prenatal testing since a) we thought we were low-risk. No birth defects in either family. No diseases, we thought, on either side and b) it wouldn't make a difference anyway. This baby was so prayed for. When the nosy people asked "Were you trying?" I liked to say "It was hoped for but unexpected." (BTW - Don't ever ask that. It's NOYB.)

Samuel was due on October 30, 2007. Then he was due on October 28, 2007. On Saturday, October 28, I dressed up as a bag of Jelly Belly jelly beans for our church/community harvest party. I was so big it just seemed to fit. I won first place in the costume contest. I think they just had pity on me for dressing up when I was due to give birth that day.

On Sunday, October 29, my dear friend Audrey came over and took pictures of my big preggo belly. It was a nice way to pass the time.

On Monday, October 30, someone (who will remain nameless) called my phone at 6 AM to ask me "Have you had that baby yet?" Um, no. And thanks for waking up a pregnant lady. Thanks a lot. Since I couldn't go back to sleep for some minor contractions, I went to Chick-Fil-A and got some chicken biscuits for me and DH and a chocolate milkshake for Samuel.

For most of the rest of the day, I napped on the couch and waited. Didn't have any of the minor contractions I had experienced that morning for the next several hours.

I don't want this to be really long so I'm going to pause here to allow for reflection. Or maybe just a break. Stay tuned for the rest of the story.

Five for Friday - Ways to spend the day off

Recently, I have been thinking about incorporating a theme to my blog instead of just the usual brain dump on a random day. I'll probably still have a random theme from time to time, but today, it's Five-for-Friday. And today's subject is my five ways to spend the day off with my son, since that's what Friday's have been as of late.

1. Get a late start and take our time with morning treatments. *Note: This is not a good plan. It's best to do this early when Samuel is still sleepy and less willing to fight. Like here:

2. Make pancakes for breakfast (which is turning into brunch. See #1.)

3. Keep my promise to go to the splash pad at local shopping center. Hopefully the big bully kids are all in school. HA!

(Thanks to Lucy's mom - the OTHER Lucy's mom - for sharing the high-calorie popsicle recipe! Samuel loves them!)

4. Finally put my pork roast in the crock pot so I don't have to scramble to make dinner tonight.

5. Clean up the muddy paw prints through my house. Lucy insisted on going out late last night after it rained. Since our back "yard" is just mud, this wasn't a good plan.

So there you have it! The first installation of Five-for-Friday and even a five picture bonus!

Have a blessed day.

Thankful Thursday

In no particular order:

1. Egg whites in a carton

2. Instant oatmeal

3. Super Glue

4. Rotisserie Chicken

5. Johnson's Bedtime Bath

6. God's love

7. 1 little blond-haired boy

8. My house

9. My job - and the ability to work

10. Coffee

*this could change in 5 minutes.

Why socialized health care is like coffee….sorta.

While standing in line behind my co-worker for access to the one coffee maker in our office, I had a thought: I hope I like standing in line.

A few months ago, the powers that be decided we should purchase one of those fancy single-cup coffee makers instead of springing for gourmet coffee-shop bought coffee every Friday. This way, each of us could get what we wanted every day and save the company some dough. Sounds like a great plan. And it is a great plan because it’s coffee and I like coffee.

There are just a few issues.

1. The quality just isn’t the same. Nothing tastes better than sipping a fresh, custom-made, toffee-nut Americano with a touch of half & half and a Splenda from a cup with a green logo and topped with a white plastic lid. Nothing. Yeah, the fancy coffee maker provides fresh coffee. I get an adequate cup of hazelnut-flavored brew, and am provided with enough Coffee-Mate and Splenda to accommodate my particularly sweet flavor preference. It’s good enough to get me through my morning.

2. When we got the fancy coffee maker, we realized we could brew coffee, tea, and hot chocolate with our machine. The one catch is, we had to buy all the coffee and cream and sugar and Splenda and the new machine. Quite an investment for our little company! We have to store it all too. When someone wants some hot chocolate, hopefully we have it in stock. If not, we have to wait for the hot chocolate to become available…sometimes up to a week for delivery! When you want/need hot chocolate now, getting it a week later just won’t do!

3. Really, it’s just one machine. We bought one machine. But early in the morning, when people have left their personal coffee at home to drink the “free” (to them) coffee at work, there tends to be a log-jam at the coffee machine. It’s not really a big deal, it IS only a cup of coffee, but sometimes, you just can’t get that stuff fast enough. Maybe we should buy another machine for those times when we are wanting coffee at the same time, but that’s too much money and we don’t really have the room for it anyway.

4. Because I am the keeper of the order forms, I get to dictate what kind of coffee, tea, or hot chocolate we get. Sure, I can be nice and order what other like, but when it comes down to it, I order Daybreak Blend for everyone because it’s MY favorite and I think it should be his or her favorite too. What? You want TEA? Um, I’ll have to see if it’s in our budget to order another box of tea. Sorry, it’s not. Besides, you got your preferred flavor of tea last week, so let’s give those soda drinkers and chance to get what they want. Oh, that’s right, this machine doesn’t serve soda. Well, it’s still their turn to decide. You ran out of votes last week.

5. Oh, the options. Before the fancy coffee maker, I used to see those white cups with green logos nearly every day. Sometimes, two or three a day. But now, I go about a month before seeing a lonely green circle logo. I feel for the people who work at the store of the green logo because we are taking money out of their pockets. But are we? We still have the OPTION to go to the gourmet coffee shop with the green logo. In fact, it’s less than a mile away from the office. But why stop there and pay for coffee when I can get it for free at the office? I’m not personally paying for the coffee in the office. It’s the COMPANY coffee! Then I think: What if everyone got on of these fancy coffee makers in their homes and offices? What if it was required to drink some sort of brewed beverage every day and you could either get it with the coffee maker, or get it at the gourmet store? I know, for my budget, I’d choose the coffee maker. I can’t afford to go get a white cup with a green logo every day. How long before the option of going to the gourmet store wasn’t an option? They can’t operate if everyone chooses the fancy coffee maker. They have no income.

So how is this like health-care reform? Well, the quality of health care just won’t be the same. People won’t value it because they have no direct financial responsibility for it. They want a cup of coffee, I mean, they want to see a doctor, they just show up, stand in line, and get what they want. Say someone has a caffeine-deprivation related headache because they had to wait to long at the fancy coffee machine. They could demand to see a specialist for that headache because it COULD be a tumor.

The wait time would be extraordinary. There won’t be enough doctors to go around. Is that a good reason for no health-care reform, no. But it will happen. By some estimates, the time it takes to choose a primary care physician would go from three months to six months. That is not acceptable. What if the first choice doesn’t work out? Can you really wait six months to a YEAR to see a doctor?

With an impending government monopoly on health-care, it won’t take long until the check-writer, the government, dictates what we get. Just like me being the lone orderer of the coffee, some fat politicking slob will be telling me what they will and will not pay for my care. Next, they will be telling me what tests I have to have done and what choices I have to make to be fiscally responsible. Um, no. Unacceptable. I can see it now. Mandatory genetic testing on the unborn to see if they deserve life. If all is clear, great. They won’t be a drain on society. If there is a problem, then mom must have an abortion because no doctor will treat the baby. Talk about not treating a preexisting condition!

Having another option won’t be possible. Just like if everyone got a fancy coffee maker, gourmet shops will be put out of business, that’s exactly what will happen to private insurance. If we all chose the cheaper option, a logical decision, how long before that is the ONLY option? Not long, I promise you. And if you think the fancy shop was founded by a greedy old man, so be it. This is America. He had a dream. He saw an opportunity. He took a chance and he made money. Lots of money. Good for him! Go capitalism!

So, stick with me. When the gourmet shop goes out of business and we are all ordering our fancy coffee-maker cups, we’ve just given the maker of the cups the market share. They can now dictate what coffee cups are available and which are not. AND they can set their own price on the fancy coffee cups because they are the only place in town (or the internet) to get the fancy coffee cups. Should my favorite, Daybreak Blend, become very popular, what do you think will happen? Of course, the price will go up! Suddenly, I’m presented with two choices. I can either pay whatever price they demand for Daybreak Blend, or stop drinking Daybreak Blend. When I stop drinking Daybreak Blend because I don’t want to or can’t pay, then what happens? The maker will either lower the price, or say there is no demand for that particular flavor and no longer offer Daybreak Blend, further dictating what I can or can not drink. My choices just went down. It won’t take long for the other less popular flavors to fall off of the offerings menu and the cycle continues.

But enough about coffee. We all need to drink more water anyway. THIS is something no one can control the rationing of. Oh, wait, yes they can.

*SPECIAL NOTE: I love the company I work for and I'm grateful they would even offer the gourmet coffee once a week or the fancy coffee maker and supplies any time I choose. Any points made here are just for illustration and are not to be misread as disgrace, disgust (at the coffee situation) or any other negative thoughts or feelings toward the current coffee situation at my place of employment. THANKS!