Wednesday, August 11, 2010

Are Most CFers "Strong-Willed"?

I wanted to share part of an email that some good friends of mine posted on their fantabulous blog the other day. I'm sure most of you know the Olimb family, but if you don't, you're missing out. Rachel and Jeremy are two of the kindest and warm-hearted people I know and they have an awesome little fibro named Asher. You can follow their journey at asherolimb.com and I highly recommend that you do.

So here's the email that was on their blog describing a "strong-willed" child...

“Children who make decisions with intensity tend to be labeled “strong-willed.” At the end of the day, their parents feel as if they’ve been engaged in hand-to-hand combat—and that the child often wins at the parent’s expense! Most parents consider a strong will a negative personality trait because it often creates resistance and frustration in family life. Yet, in reality, it’s the strong-willed kids who are often better equipped to succeed, be creative, and face adversity.

Children with strong wills have the potential to become the next generation of leaders. They have their own ideas and plans. They know what they want. They’re persistent, confident, passionate, and determined to succeed at whatever they choose to do.

Leaders have an agenda, look for ways to incorporate others into their plans, and have a high need for control in life. Balanced with graciousness, leaders become a treasure because they make things happen, create organization out of chaos, and motivate people to action.

Unfortunately, it’s hard to raise a leader. These kids tend to have their own ways of doing things and like to tell other people (including their parents) what to do. A strong will keeps a child moving in a certain direction in spite of obstacles. Often these children need bigger barriers or tighter limits to teach them that those boundaries are firm.

Don’t be discouraged by the effort it takes to teach a strong-willed child which limits not to push. The strong-willed child accomplishes things in life, because the roadblocks that might hold others back are no match for this kid’s determination. Your job is to help him know the difference between obstacles to overcome and limits to live within.

A strong will can be an asset… as long as the heart is in the right place.”

Rachel actually sent me a message and said that she saw a lot of these qualities in Asher and was curious to know what I thought about my personality as a kid. I thought it none better to just go straight to the source and I emailed my mom about it. Her answer was short and sweet, but I think said all that it needed to:

Yes...you were a strong-willed child and the hardest part was teaching you "boundaries", "which limits not to push" and the "limits to live within." I lived in constant fear waiting for the next shoe to drop!

I found this pretty funny cause to be honest, I bet that if you would ask Mandi, she'd say that nothing much has changed. They say that most children develop their personality by 1st grade. I'm going to say that it's a pretty safe bet that I was no different.

So what do you think? Do most cysters and fibros you know exhibit "strong-willed" personalities?

Tuesday, August 10, 2010

The Perfect Way to End a Day...

Man, what a day! First though, I think we ought to start with the weekend that preceded it. This weekend was a blast. We had a successful event for CysticLife on Saturday (pictures here) and I'm so thankful that Fred Astaire Dance Studios would be willing to raise money for the CF community. The studio required nothing from us return and just asked that we enjoy the show. We were pleased to find out that they sold close to 250 tickets which was well over their average of 130 as compared to past years. It was extra special as my family drove up for the event and Mandi's mom happened to be in town as well. We were all able to hang out afterwards and grab a bite to eat (grandma included) which is definitely one of my favorite things to do.

The fun continued on Sunday when Nancy (mom-in-law), Josh (bro-in-law), Chrissy (sis-in-law) and Wongers came down to hang out and enjoy some homemade tacos. Mandi and I love hosting company. We actually had to run out and get some shower curtains as all of them stayed the night (except for Wong). Nancy was flying out the next morning and Josh/Chrissy wanted to see what the morning commute was like as they are thinking about moving to the area (don't even get me started about how excited I would be if that happened). Anyways, it made for a great time and I'm hoping that we have another hangout/sleepover/dinner party real soon!

Monday started as any typical Monday full of work with a little bit of work sprinkled in. I was actually looking forward to getting back to it as I worked less this weekend than I normally do. The real fun started at the end of our workday though. We were able to babysit the A-Clan, minus one member. We met my cousins, and their gaggle of kids, at a local park to hang out with them as they took Ella (oldest child and only daughter) to her first grade orientation. We were left with Levi, Noah and Luke. All are adorable and all are full of energy upon energy. The job was made simple in the fact that this park has a killer playground. The kids spent most of the time on the "monkey web" as they call it. It's this big contraption made up of 100's of ropes that form almost a pyramid shape that the boys (and I) had a fun time climbing. The park also has a dog park inside of it, so it was also fun to watch all of the dogs come and go. We only got to spend a couple of hours with them, but it was packed full of excitement and non-stop action. Which leads me to the best way to end the day...

...I'm actually writing this early Tuesday morning as I just woke up next to Mandi on the couch. We fell asleep snuggling on the couch at who knows what time. We couldn't keep our eyes open (which is rare for me) and before I knew it, it was the middle of the night and I still had to do my last treatment. That last treatment is currently shaking me as I sit here and I type this blog. I can look to my left and see my beautiful bride just laying here sound asleep. I can't believe how lucky I am to be able to see her every night before I close my eyes and then wake up with her every morning when they open.

My vest just ended and now I must be off to bed; it all starts over in the morning. If I'm luckily though, tomorrow will end just as today.

Monday, August 9, 2010

Martha Stewart Watch Out!

My mom has an eye for decorating. My parents' house looks like something straight out of a decorating magazine. My mom has this unbelievable ability to find the most beautiful items at unbelievably cheap prices. She'll find the coolest things at TJ Maxx, second-hand stores, you name it. And the best thing about my mom's ability to decorate, is her ability to find something cool, refashion it, and make it cooler. She can sew, build, create. It's amazing!!

...I, on the other hand, am a decorating IDIOT. I don't know what goes with what, where things go, how to find killer deals - nada. But lucky for me, I had my mom in town this last week to get me going on a decorating kick. She showed me that with just a few additions, you can make a big impact. So Ronnie and I added a few touches this week....check them out!

This is a Turkish Dough Riser I got from Razmataz and filled it with chick peas, split peas and kidney beans and candles.
Two veggie pictures from The Great Indoors
A GIANT fork from The Great Indoors- who doesn't need a giant fork, right?
An iron piece to hang on the oven hood from Hobby Lobby (like how I don't know what to even call it?!)
Used the same beans to fill the glass jars on the table - beans from Walmart.
Another iron thing, this time hung above the bed from Hobby Lobby

Sunday, August 8, 2010

Clinical Trials Act

'IMPROVING ACCESS TO CLINICAL TRIALS ACT' PASSES U.S. SENATE IN VICTORY FOR CF ADVOCATES

The U.S. Senate last night passed the "Improving Access to Clinical Trials Act" (I-ACT), a bipartisan piece of legislation championed by the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations.

The legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits.

"We are one step closer to breaking down a serious barrier to participation in clinical trials, which one day could deliver a cure for cystic fibrosis," said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. "This legislation represents an important opportunity for people with CF to take part in groundbreaking research that was previously out of their reach. We are elated that this bill has been approved by the Senate."

The legislation was introduced by Senator Ron Wyden, D-Ore., with Senators Chris Dodd, D-Conn., James Inhofe, R-Okla., Richard Shelby, R-Ala., Dick Durbin, D-Ill. as original co-sponsors and an additional 14 co-sponsors also signed on.

Current law prevents many people who receive Supplemental Security Income (SSI) from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty has stopped significant numbers of people with rare diseases from participating in clinical studies.

Following Senate approval, the bill now awaits consideration by the U.S. House of Representatives. Reps. Edward Markey, D-Mass., and Cliff Stearns, R-Fla., are leading the effort to pass the bill in the House. The legislation, HR 2866, is co-sponsored by 135 members.

Passage of this legislation is particularly important for people with CF, a rare genetic disease that affects 30,000 people in the United States. A limited patient population makes it challenging to find enough people to participate in research studies evaluating the effectiveness of promising new drugs.

Source: http://pr-canada.net/index.php?option=com_content&task=view&id=241611&Itemid=58

Saturday, August 7, 2010

What's in a Google? WHERE

Here's something I started a couple of weeks ago on RSBR, cause as we all know, the weekends are slow around here. I call it "What's in a Google?". It's simple really; type one word into Google and see what the magic bot suggests for you. Once in a while, you can get some pretty funny suggestions. What's crazy, is I'm pretty sure that it means these are the most common searches.

Word: Where

Top suggested searches:

where's my refund
where do i vote
where the wild things are
where is chuck norris
where to vote in arizona
where's waldo
where the heart is
where to vote
where
where the red fern grows

I've highlighted my favorite. I often wonder what Chuck Norris is up to these days and where to find him. When I actually searched for Chuck Norris, I came up with this screen:


That's enough for me! I'll be going into hiding now :)

Friday, August 6, 2010

Flash Me Friday - "The Fridge"

There is officially no Flash Me Friday today, but I'll be making up for one of the two that I've missed leading up to this point. In late May, the Flash Me called for pictures of our refrigerator but I didn't get the memo until I was walking out the door for a family trip. To see the cold boxes of others, please click here. Our fridge is pretty typical, and in a perfect world, would be bigger, but such is life. I do the best I can to keep it clean and organized, but as you'll see in the pictures, this doesn't always happen :)


What you see is what you get...although the water and ice dispenser come in handy for late night drink runs :)


Can you spot the Pulmozyme?


From top to bottom (must haves): Eggs/Powerade, Diet Mountain Dew, Cup Cakes, Yogurt, Hamburger, Bacon, Pizza Sauce


From top to bottom (in terms of organization): Reese's Peanut Butter Cup, [empty], Frozen fruits/vegetables/cheese, Meats, Grains

Side fridge: Full of ice packs and coffee

Are you interested in participating? This brainchild of Jen over at The Groettum Family blog is a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever. If you want in on the action, please visit here for the "rules".

Thursday, August 5, 2010

What the _____?: August 5th, 2010

A while ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed all weeks so keep it coming!

This week's picture:


Alright, what do ya got!?!?

Last week's photo with the winning caption:


Winner: "I'm so desperate, even a one handed hooker will do"
submitted by Allison

2nd: "Unfortunately, she is the best he can do..."
submitted by Amara

3rd: "At least this 'woman' is solid and won't pop like my blow-up doll!"
submitted by Kati

Wednesday, August 4, 2010

Dancing Through The Decades w/ CysticLife

Here's the question: How many of you live in the Phoenix area AND have no plans this Saturday? Please, not everybody speak up at once :) Well, it's worth a shot to at least give you guys the info on this cool little painless fundraiser that's being held with all of the proceeds going to CysticLife. Here are the details:

August 7 · 2:00pm - 4:00pm

Tempe Center for the Arts Theater
700 W. Rio Salado Parkway
Tempe, AZ

Fred Astaire Arizona is proud to present “Dancing Through The Decades” – A benefit performance for CysticLife. Both Fred Astaire students & teachers will be dancing numbers and routines to music throughout the decades to the songs that have inspired us, made us laugh, or just want you want to dance. The show is filled with novelty numbers, ballroom numbers, and Latin numbers for the audiences enjoyment. We would LOVE to see you there!!

Not in Arizona? You can still purchase a ticket just to donate to the cause!

CLICK HERE TO BUY TICKETS:
http://tca.ticketforce.com/ordertickets.asp?p=815&backurl=default.asp

I would absolutely love to see you guys there and like the blurb said, if you can't come but would still like to buy a ticket, the money is going to a great organization. CysticLife's sole mission is to make an immediate impact in the lives of CFers and their families. Every dollar that we raise can help CL fulfill that mission.

Thanks guys!!

Tuesday, August 3, 2010

Another Day, Another Drug Study

Can I just say, I love me some drug studies! I'm pretty much on a schedule now of doing drug studies back-to-back-to-back and so on and I'm already plotting the next one I'd like to do. I figured though that I'd fill you guys in on the one that I started today. Actually, I misspoke, I sort of started it today. I went in to give blood and urine so they could establish a baseline to compare the rest of the data with. Friday is the big day in which I actually get to take one of two doses of the drug or a placebo. I of course hope I get the real deal, but hey, somebodies got to take the sugar pill right?

Ok, so what is this drug? Since I'm no medical mind and although I have a pretty good idea of what it is supposed to do according to my doc, I still won't attempt to answer. I will however let Clinical Trials Feeds give you their answer:

Official Title: “A Randomized, Double Blind, Parallel Group, Placebo Controlled 28 Day Study to Investigate the Safety, Tolerability and Pharmacodynamics of SB-656933 in Patients With Cystic Fibrosis”

Study Drug, SB-656933, is a selective CXCR2 antagonist in development as a novel, once-daily oral anti-inflammatory agent for the maintenance treatment of Cystic Fibrosis (CF) and Chronic Obstructive Pulmonary Disease (COPD). We want to find out if this experimental drug will help decrease inflammation and slow the progression of lung disease. This study compares how well different doses of the experimental study drug (SB-656933) control inflammation in patients with CF. Two doses of the study drug will be assessed against placebo to see which dose works best.

And how will they know if this stuff works? Well, we have to go to ClinicalTrials.gov for that:


Primary Outcome Measures:
  • Safety and tolerability of SB-656933 in subjects with cystic fibrosis, including, adverse events, vital signs, clinical laboratory assessments (hematology, chemistry, urinalysis, and VB-1),electrocardiographic (ECG)parameters,and exacerbation of CF [ Time Frame: 28 days and followup ]

Secondary Outcome Measures:
  • Sputum microbiology at 28 days as measured by bacterial colony counts of Pseudomonas aeruginosa and Staphylococcus aureus [ Time Frame: 28 days ]
  • Induced sputum neutrophil number (cells/mL) and percentage (%) [ Time Frame: 28 days ]
  • Induced sputum inflammatory markers: (e.g. but not limited to: NE, MPO, total protein). [ Time Frame: 28 days ]
  • FEV1 and FVC [ Time Frame: 28 days and followup ]
  • Serum and plasma markers of inflammation: (e.g. but not limited to: fibrinogen, CRP, CC-16, MMP8, MMP9, SP-D, CXCL8 (IL-8)) [ Time Frame: 28 days ]
  • Daily Respiratory Symptom Diary for Cystic Fibrosis (Self Reported Version (Exploratory)) [ Time Frame: 28 days ]
  • Plasma SB-656933 concentrations and pharmacokinetic parameters including area under the plasma drug concentration vs time curve (AUC(0-24), AUC(0-infinity)),maximum observed plasma drug concentration (Cmax)and time to maximum observed plasma drug consent [ Time Frame: 28 days ]
So needless to say, I'm hoping this sucker works cause inflammation is definitely something I battle. I will keep you guys posted on how it's going and let's all hope that this can be another gun in our arsenal in the next handful of years. I guess I better go read the disclosure clause in the contract now :)

Monday, August 2, 2010

Slacker Monday

I know I know, I'm horrible because it's 11 am AZ time (meaning for many of you folks it's 2 pm) and I'm JUST getting a blog up.

As many of you know, I have been in San Fran all weekend for the CFRI conference. It was a BLAST. It was great getting to put faces to so many names and voices and to meet many people I didn't know before. I will admit, I have SEVERE small talk anxiety, so the thought of making small talk all weekend made my heart race and my palms sweaty. But as soon as the weekend was kicked off, I was chatting away sans racing heart and sweaty palms...everyone was so nice and comfortable that it made small talk bearable - even enjoyable!!

Some personal highlights - in pictures:

I finally met Lisa Greene, a CF mom and parenting guru in person after MONTHS of talking on the phone and working together!

I got to spend time with some great people in the CF world, some faces of Genentech, Novartis and Blooming Rose Foundation (BRF)
Some GREAT women - CF moms rock my socks.
A pair of FUN CF parents that I finally got to meet in person!

Grandma Bev has been around the CF community forever and runs CF Pharmacy in FL - she's a real spark plug and who I want to be when I'm grown up.
Kat from BRF again - on the right, Rose, a freakin' awesome cyster and it was soooo awesome meeting her in person after watching her over and over again on the Breathe video (in the middle is her BF)
This smiley lady is my hero - CF mom and incredible person. I'm lucky enough to see her quite often, but having her at the conference made it that much more enjoyable. She's a riot. (Can you spot Jerry Cahill?)
Finally after talking much on the phone and respecting all that she does, I got to meet Carroll Jenkins, CFRI executive director, in person.
More CF moms - These ladies are the best!

Sunday, August 1, 2010

What's in a Google?

Here's something I started last week on RSBR, cause as we all know, the weekends are slow around here. I call it "What's in a Google?". It's simple really; type one word into Google and see what the magic bot suggests for you. Once in a while, you can get some pretty funny suggestions. What's crazy, is I'm pretty sure that it means these are the most common searches.

Word: How

Top suggested searches:

how to tie a tie
how to train your dragon
how to
how i met your mother
how to kiss
how to draw
how to destroy angels
how stuff works
how to boil eggs
how to write a resume

I've highlighted my favorite. How to destroy angels? I'd like to know where they're finding the angels that they're destroying. Maybe google could tell me that.

Saturday, July 31, 2010

CFRI Day 1

The CFRI Conference kicked off yesterday and Mandi is there with CysticLife doing us proud. If you'd like to check out some pictures from day 1 please click here.

Enjoy!!

Friday, July 30, 2010

Flash Me Friday - "The Garage"

This week's addition of Flash Me Friday call for pictures of our garage (or wherever we decide to park our rides). Our garage is about as standard as they come except for the awesome built-ins that we were left with from the previous owner. I absolutely LOVE the extra storage, although I guess it would be nice to not have to squeeze our cars in the tighter space. Every time we get out of the car or truck we have to take extra caution to avoid any door dings. But, it's the first two-car garage I've ever, so I better stop my complaints :)


View as you pull in the driveway


Two peas in a pod


Extra storage


All that we have in our garage out of storage: bikes, extra tiles and A/C filters


Close-up of our preferred choice of transportation

Are you interested in also participating? This brainchild of Jen over at The Groettum Familyblog is going to be a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever. If you want in on the action, please visit here for the "rules".

Thursday, July 29, 2010

What the _____?: July 29th, 2010

A while ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed all weeks so keep it coming!

This week's picture:


Alright, what do ya got!?!?

Last week's photo with the winning caption:


Winner: "First kisses are always a little awkward"
submitted by Suzanne

2nd: "Ok, whoever has the biggest tonsil stone doesn't have to do the dishes tonight aaaaaaaaawwwwwwwwwwwww"
submitted by Kellie

3rd: "They say that, "more than a mouthful is a waste" but it looks like ya'll are gonna have fun trying!!!"
submitted by Carollyn

Wednesday, July 28, 2010

Video of Special Date Night Song

As promised, here's the video from the concert a few nights ago. If you need a refresher on the back story, please click here. Thanks again to Ernie Halter, you made the night quite special.

"Count The Days" for Ronnie and Mandi

Tuesday, July 27, 2010

Count The Days

Just got back home from a great date night with the wifey. We agreed that since we're such big home bodies we would at least plan a date for each other every month. July was my month so I "planned" to take Mandi to a concert and then reverse happy hour. I say "planned" because it sort of just became my date night as we were already planning on going and because reverse happy hour was Mandi's suggestion. Dangit, I really need to step it up!

Anyway, we went to a show featuring Nameless Prophets, Ernie Halter and Tony Lucca. Our buddy Jay is the lead for the Nameless Prophets so it was definitely nice to go and support him. We were both very excited to see Ernie Halter as well. He actually sang "our engagement" song (which was the song that was stuck in our heads during our engagement and also the song we put our engagement photo slide show to). The highlight of the night was when Ernie dedicated that song to Mandi and I. Our buddy Jay tipped him off to the fact that we dug that song and that it meant a lot to us. He was nice enough to point us out and sing the song, "Count The Days", directly to us. I wanted to put the video up, but for some reason it won't download. I'll make sure to put it up here soon though. For now, you're stuck with just pictures from the event :)







Monday, July 26, 2010

Landscaping for Dummies

As many of you know, Ronnie and I moved into our first home when we got married. We've posted a few photos, and I know we've raved about the yard. Our backyard is like a little oasis in the middle of the desert; grass, green, plants...the works. It is so wonderful....until you have to try to keep it alive in July, in the desert, when you're a landscaping moron.

Ronnie has been doing a great job. Using well over what environmentalists would consider our share of water, Ronnie's successfully kept the yard alive with gallons upon, gallons of it. The plan so far has been: water it, mow it, and hope that everything lives. The plan has worked well for the most part. The grass is green. And (most) of the plants are still living.

Last night, we decided to move from just mowing and watering and tried to tackle hedge trimming. I'm sure our neighbors watched in disbelief as tweedle-dee and tweedle-dum haphazardly cut back the bushes in our front yard. At one point, I realized I was cutting a bush without even really watching where/how I was cutting....it was at that point I realized we probably should have waited til it was even darker, so no one could witness this embarrassing attempt at landscaping. Most of the time Ronnie was using the hedge trimmers, he was laughing. "How's this?" he'd ask. "I have no idea," I'd respond. Talk about the blind leading the blind. I'm sure neighbors cringed as I'd bend down to pick up the debris, with my face just inches from where Ronnie was throwing around the hedge trimmer - talk about trust....or stupidity!

Anyways, after a few hours of cutting, raking, pulling and picking up, the yard does look better...in our opinion (I'm sure landscapers across the country would laugh at the shape of some of our bushes).

So here's to learning curves and giving it a good old college try. Anyone have any landscaping tips or horror stories for us?? Help us out or at least make us feel better by telling us how badly you stunk before you got the hang of it!