Saturday, August 29, 2009

Your Health or Your Wallet? The "Choice" is Yours.

Note from Ronnie: I'd like to present as many different views as I can over the coming months about this debate on Health Care Reform. To see last week's post, "Health Care We Can Afford? Not Likely." please click here. If you would like to chime in on this topic, please contact me and we may be able to use your commentary on this blog. Comments and questions are encouraged, I just ask that you keep them constructive and respectful. Thanks.

This blog post is brought to us by Talana who is "27, married, with CF from Oregon, former teacher, uh uh uh, and I have a lot of fur children, I mean cats!"

To be alive with Cystic Fibrosis at 27 is an achievement to be proud of. But there is only one reason that I’m still here, 27 years later, and that is by the grace of God, I’ve had medical insurance that entire time. It’s never been easy, I’ve compromised my health to keep it, and I’ve spent more hours fighting with them through mail and phone than I’ve spent communicating with close relatives. These, and countless other reasons, are why I’m a strong advocate in having every single American insured, despite their health, work status, and the blows that life has given them.

My first brush with insurance denying vital care came when I was only four years old. After my diagnosis, I enjoyed good health. All I needed was the occasional oral antibiotics, the “thumps” of cpt on my chest by my parents, and my ‘”zymers” with food. Then I came down with a severe case of appendicitis. Hospitalized for a week, after an extensive surgery to remove my appendix, my parents counted on their insurance to help pay for the cost. Months went by, then a year, without a bill, and they figured that the insurance paid for my procedure and stay in full. Then a bill arrived… for the full amount. Not a single penny covered by my insurance. Why? Because they determined that my appendectomy was a pre-existing condition of cystic fibrosis. A blatant lie, as the two are as unrelated as an iguana is to a monkey, but they decided that they were not paying for it based on that. Also, I had been covered by insurance since birth, which should have exempted me from the pre-existing condition issue entirely. It was only after demanding the name and medical license number of the doctor at the insurance company did they decide to pay for my bills in full. The insurance company tried to use a 4-year-old girl to make a dime, lying by doing so, and it was only the vigilance of my parents that stopped such a gross abuse.

My childhood memories are also colored by worry over paying for my care. Neither of my parents have a college degree, but my father made a good living, working in the lumber mills, something that is a deep tradition in my family. My mother stayed at home, tending to my sister and me, as well as medical needs. Then the bust of the timber industry rippled through Oregon. I watched the fear in my parents’ eyes as my father lost his job. Not only were they worried about how to put food on our table, but they also had great fears because if I went without insurance, I would never be able to be covered again by a private insurer. Thankfully, we always found a way to keep me covered, but the pain and the struggle was not something that any family should ever face.

I went on to college, knowing that once I graduated, I would be on my own for care. I didn’t qualify financially for any state coverage in my state, so I knew I would have to have a job that offered care, and I began looking for such job when I was only a sophomore in college. I found a retail job that offered insurance if I could work 24 hours a week at minimum, but many weeks it came much closer to forty hours, in addition to being a full time student. My senior year I started my student teaching. I was leaving my house at 6:45 in the morning, teaching all day, driving an hour to work, working nearly six hours, arriving at my home at 11pm, so I could lesson plan and sleep. My care for my CF went totally by the wayside as I simply didn’t have time, but I also didn’t have any choice. If I stopped working, then I would not have coverage in a few short months, a death sentence for a CFer. If I stopped student teaching, I would lose my scholarship, owe money to my college, and watch my dreams go up in smoke. I was forced to literally work myself to the bone, in the name of keeping insurance. Nobody should have to do that, but it goes on everyday in this country.

Insurance companies are also far more concerned about making money than they are taking care of subscribers. Our current system locks you into whoever you get through your employer. Competition would be an amazing thing for our market, but doesn’t happen, so they get away with whatever they want. Over the years I’ve had them deny several drugs, some of them after several appeals, charge several thousand dollars for a year of drugs, a piece of medical equipment, or a hospital stay. All of these charges after my premium was paid, my deductible met, but still, it was more and more money bleeding out. I have triple digit copays on more than one of my medications. My vest, which helps me clear the mucus choking out my lungs, was only covered at $5,000 of the $16,000 cost. Without a grant, I would not have my vest. Every time I’ve gone into the hospital the last several years, I know that a $1,500-$3,000 bill will be waiting for me… believe me, I’ve held off going into the hospital because I knew I couldn’t afford it. My choices in my care should not be made by my pocket book, but they are, all the time. I haven’t even began to mention the struggle it took me under more than one plan to get my pulmozyme or tobi, or under another plan my azithromycin.

My story is not unique, sadly it is very common. I have married friends right now living hours apart, one working to keep their insurance, the other taking care of an elderly family member. They don’t have a choice, because they need to keep the insurance. I’ve watched friends not get married, because if they made a bit more money they would lose their government coverage and not be able to get access to care. I’ve watched others stay in loveless marriages to keep insured. I almost had to marry a friend to get on his insurance once, but met the love of my life and married him. I didn’t get my dream wedding because we got married as soon as we could so I could get on his coverage and stop paying over $600 a month in COBRA insurance because my retail job, that I worked so hard to keep, decided to stop offering insurance to employees, leaving me in a lurch, both with insurance and financially. I still made too much to get any state or federal help and I didn’t qualify for other programs because I had the option of COBRA. Without the help of my parents, I would not have made it through that very dark time. Even with their help, I often rationed care, not buying vitamins, not going to the dentist or the eye doctor, because there was no way I could pay.

I have several friends right now who are too sick to work, but continue to do so, because it is their only way to get insurance. They qualify for disability, but can’t take it, because they can’t wait two years for Medicare to start covering them. That’s right… you are too sick to work, but you can’t get insurance for two years. If we had a public option, the pre-existing condition was struck, and fair pricing despite level of health, my friends would be able to focus on their health, but instead they have to continue to compromise it to stay alive.

When I talk to friends in other countries, they all have said the same thing. “I would never trade my care for what you have to deal with in the US with insurance companies.” That to me says it all about this debate. People just as sick as I am are not scared of how they are going to pay their bills. They focus on their health. I’ve watched friends go through expensive procedures like lung transplant, and their care wasn’t rationed, like so many talking heads would like you to believe. Yes, non-emergent care may have to be waited for, but it is here as well. But when you really do need care? You get it. My CF friends went into the hospital when they needed it, they got their drugs without having to play phone tag with a nameless insurance person for hours. They didn’t have to have their doctors send countless letters documenting why the care was needed. Doctors focus on healing, patients focus on living… a utopia in my mind.

Lastly, I don’t understand how any human can look at another human and say, “you don’t deserve care because my health is more important.” My health is just as important as every other person, and their health affects me. If they don’t go to the doctor for a bad infection, because they can’t pay for the visit to get a few dollars in antibiotics, they could get me sick. The hours long wait in an emergency room filled with those without insurance affects me… filled with people that had a simple UTI turn into a bladder infection. Filled with those who have care, but couldn’t afford a co-pay or worried that taking a day off of work to tend to their health would cause them to lose their job, then in turn cause them to lose their insurance. The every growing number of bankruptcies because of medical care affects me, from rising interest rates on loans and credit cards, to less interest on my savings… and I was nearly one of those that became bankrupt had it not been the intervention of my parents.

We need to strike all pre-existing condition clauses. We need to make sure everyone is covered, from day one of life. We need to make insurance companies compete for business instead of lording the fact that they are the only choice over subscribers then dropping them when they become too expensive. Lifetime caps need to be abolished. Runaway out of pocket costs have to be reined in. Food or drugs should never have to be a choice. They only way I see this happening is if there is a government option, one that forces insurance companies to start actually insuring rather than stuffing the pocket books of their executives, shareholders, and lobbyists.

P.S. – This was written during another day of “health in America” from my trip to the pharmacy this morning, where I had to refuse to pick up several drugs because they are going to be cheaper through mail order under my new coverage. Written while answering my phone four times to speak with the clinic that is doing my sleep study tomorrow, trying to figure out my insurance, and what will be covered. I now get to call the insurance company and find out how to transfer my deductible that I’ve already paid this year to this new coverage, write a check for the uncovered part of my sleep study tomorrow, and wait for the next shoe to drop, and wonder if this time my choice will be my health or my pocketbook.

To view Talana's blog, please click here or go Remember, keep all comments constructive and respectful. This is a chance at some open dialogue between people who will be directly impacted by new policies formed in the Health Care arena.

Friday, August 28, 2009

Random thoughts from people 25-35 years old..

-I wish Google Maps had an "Avoid Ghetto" routing option.

-Nothing sucks more than that moment during an argument when you
realize you're wrong.

-I don't understand the purpose of the line, "I don't need to drink to
have fun." Great, no one does. But why start a fire with flint and
sticks when they've invented the lighter?

-Have you ever been walking down the street and realized that you're
going in the complete opposite direction of where you are supposed to
be going? But instead of just turning a 180 and walking back in the
direction from which you came, you have to first do something like
check your watch or phone or make a grand arm gesture and mutter to
yourself to ensure that no one in the surrounding area thinks you're
crazy by randomly switching directions on the sidewalk.

-That's enough, Nickelback.

-I totally take back all those times I didn't want to nap when I was younger.

-Is it just me, or are 80% of the people in the "people you may know"
feature on Facebook people that I do know, but I deliberately choose
not to be friends with?

-Do you remember when you were a kid, playing Nintendo and it wouldn't
work? You take the cartridge out, blow in it and that would magically
fix the problem. Every kid in America did that, but how did we all
know how to fix the problem? There was no internet or message boards
or FAQ's. We just figured it out. Today's kids are soft.

-There is a great need for sarcasm font.

-Sometimes, I'll watch a movie that I watched when I was younger and
suddenly realize I had no idea what was going on when I first
saw it.

-I think everyone has a movie that they love so much, it actually
becomes stressful to watch it with other people. I'll end up wasting
90 minutes shiftily glancing around to confirm that everyone's
laughing at the right parts, then making sure I laugh just a little
bit harder (and a millisecond earlier) to prove that I'm still the
only one who really, really gets it.

-How the in the h are you supposed to fold a fitted sheet?

-I would rather try to carry 10 plastic grocery bags in each hand than
take 2 trips to bring my groceries in.

- I think part of a best friend's job should be to immediately clear
your computer history if you die.

-The only time I look forward to a red light is when I’m trying to
finish a text.

- A recent study has shown that playing beer pong contributes to the
spread of mono and the flu. Yeah, if you suck at it.

- LOL has gone from meaning, "laugh out loud" to "I have nothing else to say".

- I have a hard time deciphering the fine line between boredom and hunger.

- Answering the same letter three times or more in a row on a Scantron
test is absolutely petrifying.

- Whenever someone says "I'm not book smart, but I'm street smart",
all I hear is "I'm not real smart, but I'm imaginary smart".

- How many times is it appropriate to say "What?" before you just nod
and smile because you still didn't hear what they said?

- I love the sense of camaraderie when an entire line of cars teams up
to prevent a jerk from cutting in at the front. Stay strong, brothers!

- Every time I have to spell a word over the phone using 'as in'
examples, I will undoubtedly draw a blank and sound like a complete
idiot. Today I had to spell my boss's last name to an attorney and
said "Yes that's G as in...(10 second lapse)..ummm...Goonies"

-What would happen if I hired two private investigators to follow each other?

- While driving yesterday I saw a banana peel in the road and
instinctively swerved to avoid it...thanks Mario Kart.

- MapQuest really needs to start their directions on #5. Pretty sure I
know how to get out of my neighborhood.

- Obituaries would be a lot more interesting if they told you how the
person died.

- I find it hard to believe there are actually people who get in the
shower first and THEN turn on the water.

-Shirts get dirty. Underwear gets dirty. Pants? Pants never get dirty,
and you can wear them forever.

- I would like to officially coin the phrase 'catching the swine flu'
to be used as a way to make fun of a friend for hooking up with an
overweight woman. Example: "Dave caught the swine flu last night."

-I can't remember the last time I wasn't at least kind of tired.

- Bad decisions make good stories

-Whenever I'm Facebook stalking someone and I find out that their
profile is public I feel like a kid on Christmas morning who just got
the Red Ryder BB gun that I always wanted. 546 pictures? Don't mind if
I do!

-If Carmen San Diego and Waldo ever got together, their offspring
would probably just be completely invisible.

-Why is it that during an ice-breaker, when the whole room has to go
around and say their name and where they are from, I get so incredibly
nervous? Like I know my name, I know where I'm from, this shouldn't be
a problem....

-You never know when it will strike, but there comes a moment at work
when you've made up your mind that you just aren't doing anything
productive for the rest of the day.

-Can we all just agree to ignore whatever comes after DVDs? I don't
want to have to restart my collection.

-I'm always slightly terrified when I exit out of Word and it asks me
if I want to save any changes to my ten page research paper that I
swear I did not make any changes to.

- "Do not machine wash or tumble dry" means I will never wash this ever.

-I hate when I just miss a call by the last ring (Hello? Hello?
Dangit!), but when I immediately call back, it rings nine times and
goes to voicemail. What'd you do after I didn't answer? Drop the phone
and run away?

- I hate leaving my house confident and looking good and then not
seeing anyone of importance the entire day. What a waste.

-When I meet a new girl, I'm terrified of mentioning something she
hasn't already told me but that I have learned from some light
internet stalking.

-I like all of the music in my iTunes, except when it's on shuffle,
then I like about one in every fifteen songs in my iTunes.

-Why is a school zone 20 mph? That seems like the optimal cruising
speed for pedophiles...

- As a driver I hate pedestrians, and as a pedestrian I hate drivers,
but no matter what the mode of transportation, I always hate cyclists.

-Sometimes I'll look down at my watch 3 consecutive times and still
not know what time it is.

-It should probably be called Unplanned Parenthood.

-I keep some people's phone numbers in my phone just so I know not to
answer when they call.

-Even if I knew your social security number, I wouldn't know what do to with it.

-Even under ideal conditions people have trouble locating their car
keys in a pocket and Pinning the Tail on the
Donkey - but I’d bet everyone can find and push the Snooze
button from 3 feet away, in about 1.7 seconds, eyes closed, first time
every time...

-My 4-year old son asked me in the car the other day "Dad what would
happen if you ran over a ninja?" How the h do I respond to that?

-It really pisses me off when I want to read a story on and
the link takes me to a video instead of text.

-I wonder if cops ever get pissed off at the fact that everyone they
drive behind obeys the speed limit.

-I think the freezer deserves a light as well.

-I disagree with Kay Jewelers. I would bet on any given Friday or
Saturday night more kisses begin with Miller Lites than Kay.

-The other night I ordered takeout, and when I looked in the bag, saw
they had included four sets of plastic silverware. In other words,
someone at the restaurant packed my order, took a second to think
about it, and then estimated that there must be at least four people
eating to require such a large amount of food. Too bad I was eating by
myself. There's nothing like being made to feel like Fatty McButterpants
before dinner.

That was an email forward sent to me by my friend Karen. Hope you enjoyed it!

The First Time My Son Died

Note from Ronnie: This is an email my mom sent to me regarding "the time I died". When she wrote it, she wasn't aware that it was going to be posted on the blog. I got her permission to share it with you guys and I think it's a real and raw account of what she was feeling during this event. To read about the account from my eyes please go to Part One and Part Two of "The First Time I Died".

Just because I thought I would share a bit of history... must remember, that your near death experience happened before you met every top person with any official title at UMC and before you became UMC CF "famous." When you enter ER now and you pretty much have someone sneaking you in the back door for fast service.

I realize our memories of this particular event will be different because you were laying on a gurney slowly being pickled by dehydration and I was trying to remain calm in a very anxious state of mind. I have spotty recollection of the entire event, but yet some parts are still so vivid.

My first memory is of a nurse asking me why you took so much medication? I believe I told her at least three times, "because he has Cystic Fibrosis." She was also amazed at all the information on you in the hospital computer. When I finally made it to a male triage nurse I desperately tried to explain CF, that dehydration was serious to a CFer and that could someone please at least start IV fluids. I pleaded several times to the male triage nurse, but it was like running into a brick wall. I called everyone I could think of...on-call peds pulm, 3 NE nurses station, one of the CF docs, etc. Bobby and I even discussed rolling you out into the ER parking lot and calling 911. At some point there was a phone call for me at the ER desk (I think it was a football coach checking on you) and in front of the male triage nurse I said, "It's not good, he can no longer feel the lower part of his body." Bam...within a minute you were in an ER room!

You weren't in good shape and I can't remember if you had even seen anyone medical yet, when things started going south. I had never witnessed anything like this and it was horrifying to watch. You started to breath really shallow and all the sudden your chest was literally heaving up and down on the gurney. I ran out of the room and the first person I saw was your 'angel doctor in the pink clogs'. She had treated you before and all I had to say was, "Ronnie isn't breathing right." She was in that room faster then a bolt of lightening. She was screaming your name, hitting all the emergency buttons, and then you stopped breathing. I can remember her digging her fist into your upper chest so hard that I thought she'd break something. As medical personnel were running from several directions, carts racing down the hallway, you started breathing again only to stop breathing. I saw the paddles on your chest and stepped out of the room.

I have no memory of what I was thinking as I stood outside the door. A doctor was stroking my arms up and down and telling me to breath. I know you started breathing again without getting zapped. Minutes later I hear your voice say, "tell my mom I'm okay." That is when I slid down the wall and just sat on the floor. It wasn't long and what seemed to be a 'very important lady' appeared and talked to me. I don't remember her exact conversation, but had thoughts that she seemed troubled and worried. My part of the conversation was repeating several times... clearly, "The nurses wouldn't listen. If only they had listened." and "They didn't even know what CF was."

I'm not sure why, but this last memory still puts a half smile on my face. Because you had stopped breathing you had to have an EKG. Who do you think was sent into the room to hook you up to the electrodes and the little ticker tape? Yep...the male triage nurse.

To make a long story short...Thank God you're alive and thank God for 'angel doctors in pink clogs'!!!!!

Love you,

I encourage you to share your thoughts with my mom as I will make sure she reads the comments that are left for her. I'm trying to convince her to write a couple of posts for this blog and I'm sure any begging/pleading/nudging or comments of appreciation will help greatly. I know a lot of you would enjoy a CF Life from a mother's perspective.

Thanks so much guys!

Thursday, August 27, 2009

Health Care Reform, Doctors...and my Truck?

I have so many things to be thankful for this Thursday. Here are a few:

- I'm so thankful for a place to have open dialogue. I've been able to put up a couple different perspectives on the current Health Care debate and I've been so happy with the dialogue that has followed. This issue will obviously effect a CFer and their family more than it would the average joe and it's been nice to hear different opinions. We're also fortunate that some readers of this blog are from other countries and have also been able to relate to us their experience in care of Cystic Fibrosis. If you'd like to have your written blog featured here on RSR please send it to me, and as long as it is a positive contribution to the discussion, I will post it. My email can be accessed through my profile.

So which side do you pull the toilet paper from? I think we can come to a sensible conclusion to this before we start with Health Care...gotta start with baby steps.

- I'm very very thankful for my CF doctors. This past Monday was such a telling example to me that my docs just really want to do what's best for me. When I reported my symptoms and my decline in PFT numbers, Dr. Grad didn't hesitate in offering up a hospital stay. Why am I thankful for the offer? Cause I know that some CF doctors feel pressure by insurance companies for their patients to avoid the hospital because of the cost and sadly, they give in to that pressure. My doctors however fully stand behind decisions I make when it comes to my health and trust me when I say I need to come in or if I can fight the battle outside of the hospital. (Just a quick side note: my January hospital stay cost 350,000+ dollars)
It's pretty crazy when you actually SEE how much money is spent to keep me alive and healthy. When I say "I feel like a million bucks", I really mean it!

- I'm so thankful for my truck. Sounds kind of weird to say, but it makes sense when I tell you that I was with out it for 3 days due to a dead battery. When I went to start it a couple Saturdays ago, it responded with absolutely nothing. It was deader than a doorknob as they say. Upon returning from the lake, I tried (and failed) to jump start my truck. I also tried to remove the battery myself and bring it down to Checkers and get a new one. Because I didn't have the proper tools (or skills) to do this, my truck sat there for a few days and collected dust. As I was "working on it" one night, my neighbor offered a helping hand and actually got it jump started. I drove directly to Honda where they replaced my battery with a new one. She's been running like a gazelle ever since and it's nice to have her back.
My truck is white like this one but sure doesn't look as fancy. I'm pretty sure this is a new one. I just thought the picture looked pretty sweet.

Wednesday, August 26, 2009

Remember to BREATHE

The photo above is of my CF Awareness bracelet

To be quite honest, when I work out, I often forget to breathe. But that's the whole point isn't it? At least for me it is. I'm trying to challenge my lungs and force them to take in more air than they're used to. While I'm running, Mandi will wave her hands around to get my attention (so I can remove my ear buds) and then make these huge breathing motions while telling me to get my breath under control. It really helps. Often times, I think it's still a mental block that "tells me" that I can't possibly get in any more air. I think to myself, "man am I tight, it feels like I'm in a bear hug" and the conversation ends there without me actually trying to take in a deep breath. When Mandi forces me to focus on my breathing, all of the sudden I can take big ol' huge breaths. Now, it's hard and it is often followed by a ton of coughing and mucus to follow, but again, that's the point right?

Many other people could answer, "you know, all of this painful coughing, I'm not doing it for my health" (in a snide kind of tone), but of course, we (CFers) are in fact doing it for our health. It's painful and it's not fun, but at some point you just have to make the decision that you'll go through some pain in order to get some lung function back, or at the very least, stop the plummeting PFT numbers. While you're doing it though, just do me one favor, remember to breathe. Your lungs will thank you for it.

Thursday: Walk 2 minutes, Run 5 minutes (4 cycles)
Friday: OFF
Saturday: Biceps and Back (no running due to hemoptysis)
Sunday: Pool games and breathing exercises in water
Monday: OFF (Travel and clinical trial)
Tuesday: Walk 2 minutes, Run 8 minutes (3 cycles)

As you can see, it was kind of a funky week. I started coughing up blood during my run on Thursday, but it was streaked with mucus, so I wasn't very worried. By the time my run was over, about 25 minutes later, the blood had stopped and my mucus was back to yellowish-clear. It wasn't done rearing it's ugly head however as I woke up around 3am Thursday night with a mouth full of blood. I coughed up about 2-3 tbsp of pure blood that night and have felt a little off since. I took off my other running day to let my lung heal and recover. Whenever I have a hemoptysis episode of pure blood, I usually feel sick for a little bit. I'm not quite over it as of yet, but I'm on the up and up. During my clinic appointment on Monday, my doc asked if I wanted to come into the hospital for a quick burst of antibiotics. He's worried about the drop in my PFTs (almost 10% in 10 days) and my drop in energy. I politely declined and told him I would fight my way back. I'm confident that after giving myself a few days to recover and then getting back on track with my workouts, I should get my numbers back up. I go back to clinic on September 11th, so only time will tell. I'll of course keep you guys posted!

To see pics from previous weeks, please click here, here and here.

Tuesday, August 25, 2009

My Top Ten Favorite Cereals

I have to start off by telling you that I could have breakfast for every meal of the day and more specifically, cereal, for every meal of the day. In fact, it probably WAS my meal for every meal of the day during most of my college years. Whenever I'm actually craving something, it's generally cereal. Every time I go to the grocery, I just HAVE TO walk down the cereal aisle to see if any of my favorites are on sale. If there were a cereal rehab, I would have already been committed.

So without further ado- My top ten favorite cereals ever:

Honorable Mention: Sugar Smacks, Cap'n Crunch, Honey Bunches of Oats

10. Cheerios: a simple classic...although I do like to pour on quite a bit of sugar.

9. Trix: I was sad when they changed to the little pieces shaped like fruit. They actually hurt my mouth when I ate them. They saw the error in their ways (and all of my complaint letters) and recently changed back to perfect little smooth round balls of goodness.

8. Honey-Comb: I'm not sure if I like these better with or without milk, but if my hand were to the fire, I might have to say without.

7. Kix: Ronnie tested AND Ronnie approved. I do like to add a good amount of sugar to these also, but I will say, they are already sweet enough out of the box.

6. Frosted Mini-Wheats: When I eat these, I can't explain the feeling I get when I'm about to bite into a little mini-wheat that is absolutely covered with "frost". I'll usually let these soak in the milk a bit and then drink the "frosty" delight when I'm done.

5. Life: I love these with a ton of milk. Mandi loves these with vanilla yogurt and blueberries.

4. Raisin Bran: This is another cereal that I load the milk on with. It's such a treat to get a spoonful with a bunch of raisins in it. One of the few cereals that I don't like without milk however.

3. Lucky Charms: Mandi and I have been known to go through a box of these in one sitting. She usually picks out all of the marshmallows and eats them separately. I love crunching on the marshmallows with my two front buck teeth.

2. Quaker Corn Bran: It's actually hard to find this cereal now. I used to eat it all of the time as a kid and it's probably the healthiest one on this list. Anybody know where I could order this stuff in bulk?

1. Golden Grahams: I've never met anybody that doesn't like GG. I'll take them with a little milk, a lot of milk, no milk, water, beer, vodka, albuterol, TOBI, sweat, tears; truthfully, anyway that I can get them. I just wish they weren't 1200 dollars a box.

Monday, August 24, 2009

I had my tearful eyes opened

This week I realized something that I hadn’t previously.

This past Monday, as we sat on the couch, Ronnie asked to me read his post for Top Ten Tuesday; his list of things that made his CF life easier, and specifically, his number one. As he was reading it to me, and got to the final sentence, “and when I have death...” his eyes got watery as he finished the sentence. I pretended not to notice as he looked up at me with teary eyes for my review, and just offered up my praise for his entry. He then had me read point number three in which he wrote about his beloved (that’s me). As I read it out loud, I could feel him watching me. And as I read his words, “I want to be around for her for as long is absolutely possible” tears welled up in my eyes, my voice began to crack and a tearfully made it through the remainder of the sentence, swallowed the lump out of my throat and finished the point. Out of the corner of my eye, I could see his eyes glistening more than normal in the computer light, and realized in that moment that he too had tears in his eyes. I set the computer down, looked into his watery eyes as a few tears streamed down both of our faces, and told him it was perfect as I hugged him.

What I realized, as I sat there hugging him in the dark family room, only illuminated by the flickering, muted TV and his words on the computer screen was this: Ronnie is scared to die. I guess it’s silly to think that he wouldn’t be scared, but I think I just assumed that because he had always known it was a possibility and because of his personality/faith that it didn’t phase him. But in that moment I realized that he was scared for those of us he would leave behind. He wasn't afraid to die for him. The thought of death itself was one that didn't phase him. And the thought of going to heaven made him overwhelmingly happy. But he was scared to die for the rest of us, left here on earth. He knew the heartache, devastation and emptiness that it could potentially (and most likely) cause. He has always told me that the only time he gets choked up talking or thinking about CF is when he talks about his family. And it suddenly all made sense. He understands the sacrifices they have made to keep him happy and healthy, gets that they are a big reason he is around today, and I think (in psycho-analyzing him) that he’s scared what will happen, to his loved ones left behind, when he goes.

We did talk about it that night. We just sat there, hugging each other, my eyes tearing and opened to a realization that made my fears seem more rational; valid. It was an interesting moment between the two of us. Maybe because it’s the first time I saw my goofy, carefree best friend cry, or maybe because it’s the first time we shared, together, our fears for me when he was called home. Either way, it’s a moment I will never forget!

Sunday, August 23, 2009

Rondi sings "I'll Be There"

Just thought I'd post this tasty little might want to plug your ears.

Wanna see more music videos? Click here and here.

Lovin Lane is "CF Made"

When you have Cystic Fibrosis, it just seems like you're cut from a different cloth. I feel that I often view things a little differently. It seems like I really don't sweat the small stuff. To be honest, I think I'm a little "tougher" than most of those around me. What I call "the talents of a CFer", Marcy (a CF momma and author behind Lovin Lane) calls "CF made". I'm sure that many of my fibros and cystas out there can relate to the following blog....

So I have learned that my son is CF made, which is what I refer to as whether diving into a pool, or taking a baseball or two or three to the face, he seems to have a high pain tolerance... Something I have come to realize God has issued CF children a little more of... So his CF made body and his love for life sends him up my fence.... Will I ever get a break from the ER I wonder?? Yes today I was spared, Thank you Jesus, for my heart can take only so many... I am wondering if all the over the top number of crazy things that happen to him, is to some how out weigh the CF.... hmmmm Food for Thought.... And yes I have survived boys (we have two in high school) but this one is going to do me in... This one is dangerously invincible... Or as I say CF Made...

So what do you think? Are you "CF made"?
I know I am.