Looks Like I Need to Change My Banner

I'll write up a complete blog on this soon, but here's what you need to know:

I RAN 1.5 MILES STRAIGHT TODAY!!!!!!!!!!!!!!!!!

Great, so what do I do now?

Why We Need Health Care Reform

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 previous posts, "Health Care We Can Afford? Not Likely." and "Your Health or Your Wallet? The Choice is Yours" please click here and here. If you would like to submit a blog on this topic, please contact me and we may be able to use your commentary. Comments and questions are encouraged, I just ask that you keep them constructive and respectful. Thanks.

This blog post is brought to us by Christina. She says "I live in Wichita, KS. I have 3 children, Haley (15) Lauren (6), and Dominic (4). Haley has has Cystic Fibrosis and was diagnosed when she was 8 weeks old. I also work as an advocate for people with disabilities and I love my job. My hobbies include reading, and writing. I write quite a bit I have journals, and blogs, and I keep notebooks all over the place in my house, car, and at work and jot down my thoughts constantly. I also twitter and my user name is @advocate4all. My personal blog is daurey.wordpress.com and I just recently started an advocacy blog at humanrightsadvocate.wordpress.com.

(Whether you are for or against reform please read)

The health care reform debate has created a great division in this country. I believe that the fact that I work in the Social Services field and have a daughter with Cystic Fibrosis gives me a special viewpoint of the debate. I already knew this country was in desperate need of health care reform before I had heard of Barack Obama. Even so, I have been accused of drinking the Obama Kool-Aid. What I do know is that there is a huge gap between people who qualify for Medicaid or Medicare and people who are able to obtain health insurance through an employer.

Here are some facts. According to the US Census Bureau in 2007 the number of people covered by private health insurance was 67.5%. Also, according to the US Census Bureau in 2007 the poverty rate in the US was 12.5% and therefore those people qualify for Medicaid. So this means that in 2007 20% of people were without and/or had no access to healthcare coverage. Another interesting statistic is that 1 in 3 people will become disabled before they retire.

I happen to work for a non-profit agency that works with people who have a disability(s). Most of these individuals became disabled during their adult years. These people were not born with their disability(s) they obtained them through an accident, or an illness, etc. Once people have a disability their choices become very few. They can A) receive disability payments and Medicaid and live well below the poverty level, B) be lucky enough for employer to actually hire them despite their disability and offers health insurance to boot or C) go to work for themselves and not be able to obtain health insurance because they have a pre-existing condition.

I also happen to have a 15 year old daughter who was born with a very expensive disease called Cystic Fibrosis. Now we are very lucky because her father works for a company that has excellent health insurance coverage. She has several medications that cost a couple thousand dollars a month and we only have small co-pay. This is great now, but there are two major problems with this in the future. First, the industry her father works in, is always laying people off. We’ve had to bite our nails through many lay offs, and even as of today, there is a chance he will be laid off next month. Secondly, my daughter is only covered while she is still in school, so when she graduates she will have to scramble to find a job that offers health insurance and hope that her health remains stable enough to keep that job. I suppose she could marry someone who has health insurance, but I really hope my daughters’ choices do not come down to her marrying someone just so she can have health insurance coverage.

As for the 67.5% of people who have insurance they are still taking a gamble because if they become disabled, or obtain a significant health issue before they are old enough to receive Medicare these people are screwed. They will be left with the same choices as the clients that I work with through my agency. I also know that Health Care Reform is not the same as Universal Health Care. It is not meant for the people who already have insurance and are perfectly happy with it (like me). It is there for the people who don’t have it, and as a back up just in case your life doesn’t end up just the way you planned it. Because let me be the first to tell you life is not going to end up how you planned it.

*Statistics obtained by the US Census Bureau at http://www.census.gov/prod/2008pubs/p60-235.pdf

To view Christina's blog, please click here or go daurey.wordpress.com. 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.

My First Hospital Stay

Now, I have a terrible memory, so I probably won’t be able to capture exactly what I was thinking or feeling during my first hospital stay, but I do have some memories from hospital stays from early on in life. My first hospitalization for Cystic Fibrosis, in which we so proudly call a “tune-up” was when I was about 8 years old. Like I said, I’m not sure how I felt about it at the time, but I’d almost be certain that I wasn’t scared. My mom seemed to always be with me (I’m sure she still had to go to work) and I knew it was something that I “just had to do”. My mom was always good at being very matter of fact and not making CF related treatments a big deal. Somehow she convinced me, or made me feel, that although I was different than other kids, I wasn’t strange or a weirdo for having to go into the hospital. She would explain to me that some kids are in wheel chairs, some kids wear glasses, some couldn’t hear and I happened to have to do treatments and go into the hospital once in a while. I understood very early on that we’re all different one way or another and it was all relative as to how “bad” you had it. I really fed off of my mom’s attitude towards CF when I was little and never was able to use this disease as a crutch or an excuse.

Anyway, back to my early hospital stays, here’s what I remember:

* Throwing a watermelon out of a window from the third floor of the hospital and watching it crash to the ground with Robbie and Rusty (other CFers)

* I think I had a crush on MULTIPLE nurses. I just remember them being so nice AND cute. There was one in particular that would give me wagon rides in the hall that I would look forward to everyday (my first hospitalization must have been before I was 8, or do they give wagon rides to 8 year old? Mom, help me out here). I believe she had blonde hair, blue eyes and went by the name Julie.

* A older CF friend of mine cutting open his maintenance bag (saline) and putting a gold fish in it to swim around for a while. I remember the nurses and doctors being quite shocked.

* Going to the doctor’s lounge late at night to shoot pool with Dave (another CFer). One time, I accidentally pulled my line out during a pool shot and didn’t notice until blood had backed up all of the way up into my IV bag.

* Playing poker with Robbie (another CFer) using change that we borrowed from the nurses coffee kitty (they would all pitch in money for coffee grounds and filters).

* IV pole races down the hall. Whether it was the one-legged push race for distance or speed, we were constantly flying down the halls on our IV poles.

* We had tutors that blocked out a couple hours a day for us to complete all of our homework. I clearly hated that part of the stay.

Those are the first thoughts that always jump out when I think of my first hospital stays. On another note, I hate to bring the mood down, every CFer I mentioned in this post has since died. Some fought the good fight for a long time while others weren't so lucky (Robbie at 16, Rusty in his early 30’s and Dave in his mid-30’s). The only reason I point that out is to remind some out there how real Cystic Fibrosis is and how badly we need a cure. The good thing is that we've come SO FAR in our fight against CF, but it won't be enough until no CFer (or family) has to suffer because of the disease.

Flying with Cystic Fibrosis: Know Your Rights

I just got done reading Talana's blog about her issue with United Airlines and the problems they gave her regarding her carry-ons and medical equipment. Check it out, it's quite a story.

With so many of us traveling, I wanted you guys to have access to the Federal Law and what it states regarding us bringing on our medical equipment. I copied the parts of the document that I felt applied to us. I encourage you to read through the full document when you have the time.

To read the full document from the U.S. Department of Transportation click here.

14 CFR Part 382

Nondiscrimination on the Basis

of Disability in Air Travel

§ 382.41 Stowage of personal

equipment.

(a) All stowage of qualified individuals

with a disability wheelchairs and other

equipment covered by this Part in aircraft

cabins shall be in accordance with 14 CFR

121.589 and 14 CFR 121.285(c) or 14 CFR

135.87, as applicable.

(b) Carriers shall permit qualified

individuals with a disability using personal

ventilators/respirators to bring their

equipment, including non-spillable batteries

that meet the requirements of 49 CFR

173.159(d) and any applicable FAA safety

regulations, on board the aircraft and use it.

(c) Carriers shall permit qualified

individuals with a disability to stow canes and

other assistive devices on board the aircraft in

close proximity to their seats, consistent with

the requirements of FAA safety regulations

for carry-on items.

(d) Carriers shall not, in implementing their

carry-on baggage policies, count toward a

limit on carry-on items any assistive device

brought into the cabin by a qualified

individual with a disability.

.....

(3) Wheelchairs and other assistive devices

shall be stowed in the baggage compartment

with priority over other cargo and baggage.

Where this priority results in passengers’

baggage being unable to be carried on the

flight, the carrier shall make its best efforts to

ensure that the other baggage reaches the

passengers’ destination within four hours of

the scheduled arrival time of the flight.

....

(c) Carriers shall not require qualified

individuals with a disability to sign waivers of

liability for damage to or loss of wheelchairs

or other assistive devices.

If you have anything in addition to this, please send it to me and I will add to this post. I would also like to hear your stories- Have you had any problems when it comes to flying with your medical equipment?

And remember to take a look at today's Thankful Thursday...seems like quite the cowinky-dink that I listed "airplanes" today.

My Heart be Burnin'!

Here's what I'm so very thankful for this Thursday...

- I’m very thankful for airplanes. Although I’m a huge fan of road trips, the last cross-country adventure that Mandi and I embarked upon took a lot out of me and ended up crippling me for awhile (I went to ER cause I couldn’t walk when I got back to Arizona because of foot pain). I’m still amazed that a huge structure made of steel and full of people can magically float in the sky and make it across the entire United States in 4 hours. I wish I was smart enough to ACTUALLY understand flight. I’d also like to give big ups to Southwest Airlines as they are my preferred carrier and have paid me a lot of money to say that…man, that’d be awesome if that were true.

- I’m very thankful for anti-acid medicine. I’m not sure why, but I’ve had heart burn since Sunday (I think it was your spaghetti-bake mom) . I take Protonix, which usually squashes the fire coming up from my stomach, but I’ve been doubling the dose this week to keep it under control. I won’t lie, heartburn/acid reflux stinks and is super distracting, but I sure am glad that there is medicine we can take to control it.

- I’m thankful for my best friend Corky (his birth name is Clifford, if you’re curious). It was his big 30^th birthday yesterday and he also celebrated one full year of the married life in July. We’ve been best friends since we were 14 years old and ended up starting at a new junior high school on the same day (second day of the second quarter). He also lived just about a 5 minute walk from my house, so to say that we hung out everyday in high school would be an understatement. We were roommates in college and roommates when we entered the “real world” after college. Here’s to 16 years of friendship and counting Cork. Happy Birthday!

Corky and his beautiful wife, Mari

Did you miss other Thankful Thursdays? Not to worry, click here, here and here

Can You REALLY Give an Excuse After This?

I understand that working out consistently can be a challenge so I wanted to post a video for Workout Wednesday that I'm hoping will inspire many of you. You may have already seen it as it is one of the favorites in the Cystic Fibrosis community. Every time I see this video I just get more pumped up and eager to grab the bull by the horns and get into the gym or hit the pavement running. Without further ado (and please watch the full video as it is only a minute long)...

As far as my week, here's the breakdown:

Aug. 26th-Sep. 1st

Wednesday: Shoulders and Legs

Thursday: Walked 2 minutes, Ran 10 minutes, Walked 2 minutes, Ran 14 minutes, Walked 2 minutes, Ran 11 minutes (To view my running program, click here)

Friday: Walked for 20 minutes

Saturday: Back and Biceps, Pool games, Swimming

Sunday: Walked 2 minutes, Ran 8 minutes, Walked 2 minutes, Ran 8 minutes, Walked 2 minutes, Ran 10 minutes

Monday: Walked for 30 minutes

Tuesday: Travel

Since I'll be out of town part of this week and next, and there is no gym, I will just be running and walking for my workouts. Good thing is, it's cooler here in Florida so my opportunity to run will be even greater. I actually get to run on the beach some too since Mandi's grammy only lives about 200 yards from the ocean. I'll also be able to do push ups and sit-ups while I'm here and try not to lose this solid two-pack that I have going on with my stomach right now :)

Rondi sings "Wild Horses"

Back by popular demand.....

...and make sure to check out today's Top Ten- "Who I'd Like To Be".

The Top Ten People I Would Like To Be

Now, I see how this list would give you the impression that I'm not happy with who I am, which, if you've read this blog before, you know that this is not the case. This is more of a list of people that have skills I would want or lifestyles I think I would like to live, or even have jobs I would take in a heart beat.

Just missed the cut: Sir Richard Branson, LeBron James, Sean Miller (Go Cats!!), Warren Buffet, Michael Phelps, Will Smith, John Mayer

10. Ray Lamontagne- I love his music and I think he sings straight from his heart. He gives off a ton of emotion with every song he sings and I wish I could feel the connection with music that he does.

9. The Mac Commercial Guy- I pretty much love everything Mac, but I wouldn't really want to be Steve Jobs. I would rather design their packaging than come up with any actual software. I would also love to be their spokesperson and appear in those hilarious commercials.

8. Tom Brady- My favorite sport by far is football. He is the quarterback of a team that's considered a dynasty of this era and he works 16-20 days a year (at least that we see). He was an unheralded QB coming out of college and has proved a lot of people wrong.

7. Will.I.AM- I like the thought of making beats all day in a studio and getting to work with some of the best artists of our time. He also tours the world and gets to perform in front of 1000's of people.

6. Phil Ivey- Get paid to sit at a table and play cards? Yes please. Most professional poker players consider him to be the best current player and for sure the most feared. I wonder if they'd allow me to do my treatments at the poker table?

5. Jack Black- What I like about Jack Black, is he gets paid to be Jack Black. He doesn't worry about being in shape, or shaving, or even combing his hair. He just makes people laugh by simply standing there and being Jack Black.

4. Conan O'Brien- I'm sad to hear that since he took over The Tonight Show isn't doing as well, because I think he is hilarious. He started out writing for Saturday Night Live before having his own show and I think it shows by all of his crazy characters and skits.

3. Justin Timberlake- He just seems to be a cool dude who can do it all. He sings, dances, acts, writes, makes music- just a jack-of-all-trades kind of guy. I also like how is music has appealed to many different people across all spectrums of life.

2. Jamie Foxx- So Jamie Foxx is like the really funny version of Justin Timberlake. He's another guy who can do it all. Whenever he hosts a show, you can count on a ton of laughs and the fact that he can sing and dance also, puts him in the lead over JT.

1. Tiger Woods- He is one of the best athletes of all time in a sport that requires you to walk around the grounds of some of the most beautiful places in the world and swing a club. I'll take that every day of the week.

To see other top ten lists, please click here, here and here.

Life's Simple Pleasure - New Shoes

I write to bring you some news that is quite possibly only thought of as “exciting” by me, but I will share it anyways. Yesterday morning, after our gym session and Dunkin’ Donuts breakfast, we decided to go get new running shoes. This for most people, is not an exciting event, but let me explain. I first need to give you a little back story so you can fully understand my excitement about new shoes.

I’m not a runner...I just happen to run. I was raised in a running household. Both my parents are marathon runners and my brother ran track and cross country in high school and continued on as he aged (he’s 24) to also run marathons. When I was younger, not only did all my family members run on their own, but they ran together. Have you ever seen what looks like the Partridge family merrily prancing down the shoulder of the road together? If the answer is yes, you might have passed my family. When they would go on their runs they always asked me to come along, but I would sarcastically decline and tell them I would get my workout on the couch. I thought running was pointless. I played soccer and danced in high school and thought the act of just running, for no point, was stupid (Looking back, it was probably a defense mechanism because I knew I could never keep up).

That all changed when I got into college. Fall of my freshman I had an epiphany. I realized that in the real world, when you’re grown up, running is probably the easiest form of exercise to do. Why you ask? You can do it alone, anywhere, with very little equipment. I soon realized that without soccer and dance I was going to rapidly gain weight and lose muscle because I wouldn’t be moving around to burn calories and I knew that I would definitely not be able to keep my sweet tooth under control. So I decided to try the one thing I saw the grown ups around me doing: run.

I soon began to run frequently. I became fascinated by the fact that I could continue to push myself and continue to add miles. I began to enjoy it, and even miss it when I had gone a few days without running. I started to pick up my miles as my lungs and legs permitted. And that’s when it became apparent that I wasn’t a “runner”. Sure I was running, but my knees started to let me know that I was not built to run. For the next 4 years, I struggled. I would go through spurts of running until my knees would act up just a little too much and I’d have to give them a rest.

That brings me to now. A few weeks ago I started training for my first half marathon. I have started training for other races in the past, but as my mileage increased, so did my knee pain. This time, however, I decided I was going to treat myself to the perfect pair of running shoes. So yesterday Ronnie and I went to a running store, Road Runner, and I had them look at my feet while I ran to see what kind of shoe I needed. I had done this once in the past, but had not reaped any reward. But this time, I can feel it. I have faith that my size 7 Asics Gel-kayano 15s will be just right. I have always run in Asics, but these I just have a good feeling about and with these new insoles that they gave me, they should be even better.

And that is the story of why my knees and I are so excited about my new shoes. Hopefully they’ll treat me right, feel good through my training, and carry me through the Shanghai half marathon in November. (My brother and I are going to visit my parents, who live there, for Thanksgiving and are running it together- and by together I mean on the same day he will finish WAY before me. My parents are merely going to be there to cheer us on, as they don’t want to tire their legs out for their half marathons they are running in Singapore the weekend after.

...but none of them will be doing it in as snazzy of sneakers :)

PS- Ronnie got new shoes also, but I'll let him tell you about them on Workout Wednesday...so stay tuned.