My Health Renovation

Guest post by Elizabeth Haran

ren·o·vate

tr.v. ren·o·vat·ed, ren·o·vat·ing, ren·o·vates

1. To restore to an earlier condition, as by repairing or remodeling.

2. To impart new vigor to; revive.

I have gone through many stages with my CF, trying to hide it as a kid for fear of being “different”, complete denial and non-compliance in my early college years, and finally an acceptance of what this disease really means for me and my future. About 6 months ago I entered a whole new stage, “renovating” my health. Yes, there are certainly parts of CF that are out of our control, but to a certain degree our health is dependent on how hard we are willing to work for it. I learned this the hard way. In the Fall-Winter of 2008 I was put on IV treatment for what I thought would be my standard 3-week clean-out. Instead I spent 10 weeks on home infusions and for most of that time extremely ill. For the most part I spent my days moving from my bed to my couch, every move I made sucked the energy out of me. I was barely able to get myself in and out of the bath tub and standing in the shower was not even an option. I ran a fever for weeks, at times reaching as high as 106 and my whole body ached. My doctor went through 6 different drug combinations during this time, never able to find one that actually seemed to make me feel better. He sent me to an infectious disease specialist who really had no other suggestions. I had an air-quality specialist come in to test my home to make sure there was no mold that could be contributing to making me sick. No significant mold levels were found.

I was feeling completely helpless and I looked my doctor in the eye and asked him if I was dying, because I was beginning to believe that was what was happening. His answer was that he did not think so, that I was just going through a rough patch. I have been treated by my CF doctor for the past 23 years; I trust him completely, but I wasn’t convinced on this one. Fast-forward to the end of that ten week period. My doctor figured out (not soon enough) that I was having a reaction to one of the meds called “drug fever.” While that could account for some of the symptoms that I had experienced, I got my PICC line pulled with an FEV1 not any better than when I started! 10 weeks of pure hell….for NOTHING!

Well now, almost a year later I can look at that experience and say that maybe it was not for nothing after all. There was something to gain and it may have been a blessing in disguise….

I continued as usual for the three months following the end of IV treatment trying to recover, only to have another PFT done in March, and blowing my all time low (FEV1 of 43%.) My fear kicked in again…it prompted me to make numerous drastic changes to my daily routine and as a result I have greatly improved my health. It was at this time when I stumbled across cf.com and subsequently runsickboyrun.com. I spent endless hours reading and researching about the tactics that other CFers use to maintain their health. I was surprised (or more like shocked and appalled) to realized how many things I was doing WRONG. I thought I did so much day to day to take care of myself, when in reality there was so much that I was not doing that I should have been. I decided that it was time for a “health renovation!”

I am so grateful to the members of cf.com and to Ronnie for motivating me to take control of my health and ultimately helping me increase my FEV1 by 23% since I became a member of cf.com!!! I had always been relatively compliant with my medications and treatments and “got by” but this was not enough anymore. I made a pact with myself to be 100% compliant 100% of the time. I have stuck to that over the past 6 months (no matter how early I have to get up to fit my treatments in, or if I am struggling to keep my eyes open to do my treatments at night)….and as I sit here typing this feeling better than I have in years…I am so glad that I have. At my last clinic visit 1 week ago I had an FEV1 of 65% and FVC of 118%. I have been on a “PFT high” ever since, and am more motivated than ever to work as hard as I possibly can to keep that number rising!!!

Here are the changes that I have made to my routine over the past 6 months…

1. I switched from using the Hil-rom 104 vest to using the Respirtech Incourage vest system. I like the features that this system offers and I personally find that it makes my vest sessions more productive.

2. For years I had been using the PariTrek portable compressor for ALL of my nebulizer treatments completely unaware that this unit is NOT supposed to be used for Pulmozyme or Tobi. I have now switched to using the DeVilbiss PulmoAide.

3. I began taking PharmaNAC Fizzy Tablets 2x/day.

4. I began taking a multi-strain Probiotic daily.

5. I began using the NeilMed Sinus Rinse with sterile water, and sterilizing the bottles after each use. I had sinus surgery as a child, and thankfully have not had many sinus problems since, however I still LOVE this rinse!

6. My doctor had been prescribing me Advair for a couple of years but I would rarely remember to actually use it. I now use it 2x/daily.

7. Over the past few years I really fell out of any sort of exercising routine. I was really getting no physical activity at all. I now have worked my way up doing 45-60 minutes of cardio 4-6 days per week. I also take 1 hour Pilates classes 2x/week. I truly believe adding exercise to my daily routine is one of the MOST IMPORTANT changes I made!!!

8. I am ashamed to say that I used to NEVER sterilize my nebulizer sets, just rinsed with soap and water and sometime even used them while they were still wet. Yikes!!! I have since started sterilizing after every use using the Phillips Avent IQ24 electric baby bottle sterilizer and the Germ Guardian for drying.

9. I have become much more germ-conscious (i.e. I constantly wash my hands, try not to touch my face unless my hands are clean, I never go anywhere anymore without hand sanitizer in my bad and have bottles of it all over my house and in my car. I also make it a point to change my bedding more often than I used to.)

10. For years I have been spending a majority of my time in the basement of my house. It was our family room/office. A few months ago we had some water seep in through the basement floor during a bad rain storm. This wasn’t the first time this happened and as stated above we had recently had the house tested for mold and got a clean report, but I was armed with my new “proactive” attitude and decided that it was the end of the basement for me. I banned myself from the basement. Although there are no visible signs of mold or dampness, why should I put myself in an environment where I could possibly be at risk for making myself sick? The answer is simple…I shouldn’t. This definitely wasn’t the most convenient decision considering the layout of my house. Losing the basement meant losing a significant amount of usable living space and involved some rearranging. I now only step-foot in the basement to do laundry and when I do this I wear a mask.

11. I bought two Alen350 Hepa Air Purifiers, one for my bedroom and one for my now office/TV room where I spend most of my time while I am in the house. Also I never opened my bedroom windows during allergy season…so at the very least I could be sure I was sleeping in good clean air.

12. I have not yet decided to take Mucinex on a daily basis. However, there have been two times in the past few months that I have felt like I was starting to get sick and I have immediately started taking Mucinex for 10-14 days. My doctor’s opinion on this is that it will do very little for people with CF, but it has helped me to kick two minor colds without them turning into full on exacerbations. So in my opinion it is doing something to help and I will continue this routine when I feel I need to.

It is hard to say which of these things has specifically made the most difference in improving my health, but I plan to keep it up! And I will constantly be looking new things to contribute to my “renovation.”

Elizabeth Haran is a 26 year old, who was diagnosed with Cystic Fibrosis at 6 months. She was born and raised in Brooklyn, New York where she currently lives. She graduated from St. Joseph’s University in Philadelphia, Pennsylvania in 2005 with a degree in Marketing. Her interests include photography, reading, music, the beach, shopping, spending time with her family & friends, and of course WORKING OUT and staying healthy!!

Note from Ronnie: I just wanted to give a big thank you to Elizabeth for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on . She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Elizabeth your encouraging comments as well as any questions you may have!

If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.

My Top Ten Favorite Cities

I love to travel. One of the few claims to fame that I have is the fact that I have been to 42 of the 50 states. The following list represents the first 10 cities to come to my mind when thinking of my favorite cities to spend time in...

10. Austin- Austin just has an overall cool vibe. I’m a huge fan of music and Austin has one of the best music scenes in the nation. The city is full of laid back artists, hippies, musicians and college kids from the University of Texas. It’s a great place to have a lot of fun.

9. Miami- Miami is another one of those cool cities. The architecture in Miami Beach is some of my favorite and people just seemed to take it easy there. It’s definitely one of the most fun places to just hang out for a week.

8. Denver- I like the state of Colorado overall, but Denver has to get the nod as my favorite city in the state followed closely by Colorado Springs. Denver has a fun downtown area and has multiple hiking trails and parks just outside of the city.

7. Atlanta- I love the Midtown area of Atlanta the most. What really stands out to me though is the campus of Georgia Tech. I LOVE red or brown brick buildings which you will see plenty of in Midtown and on campus.

6. Boston- I think Boston is the cleanest biggest city I’ve ever been too. Although it seemed to always be under construction, the city still seemed very orderly. The second best fire works show I ever saw took place in Boston.

5. Chicago- I grew up liking almost every professional sports team from Chicago. It started with the 1985 Chicago Bears and watching them play in the first football game that I remember watching (happened to be the '85 Super Bowl). I’ve only been there once but fell in love with the city immediately. I also have many friends from Chicago that can’t say enough good things about the city which only builds my affinity for it.

4. New York- I was fortunate enough to spend a couple summers in a row in “The City” around the 4^th of July. The fireworks display over the East River is the most stunning show I’ve ever seen. It truly is the city that never sleeps and there is always something to do. I couldn’t live there, but I love visiting.

3. San Diego- I like pretty much every city in California, but San Diego is the one that I’ve been to most often. I love taking the trolley all over the city and walking through the Gaslamp District. The weather is great year round and it’s tough to beat the scenery in southern California.

2. Phoenix- There’s not much that I don’t like about Phoenix. I love that you can live outside of the city by 10 minutes to get that “country” feel but be close to everything. It’s also nice that there are a plethora of outdoor activities year round from hiking, to boating, to four-wheeling.

1. Tucson- Tucson is (and will always feel like) home to me. I went to and graduated from the University of Arizona and will ALWAYS be a Wildcat. My favorite things that Tucson offers: my family, the mountains, the sunsets, the lightning storms, and the U of A.

So what do you think? Is there a city that I didn't list that I just have to go to? Maybe I've been there and it just didn't make an impression :)

I'd love for you to drop me a quick note about your favorite city and why I should visit....

Interesting article about Bacteria

Deep Inside Bacteria, a Germ of Human Personality

Bacteria are the oldest living things on earth, and researchers have long felt that they must lead dull, unfussy lives. New discoveries are starting to show just how wrong that notion is.

For a simple, single-cell creature, a bacterium is surprisingly social. It can communicate in two languages. It can tell self from nonself, friend from foe. It thrives in the company of others. It spies on neighbors, spreads misinformation and even commits fratricide.

"Really, they're just stripped-down versions of us," says Bonnie Bassler, microbial geneticist at Princeton University, who has spent two decades peeking at the inner lives of bacteria. Dr. Bassler and other scientists are using this information to devise new ways to fight infections and reduce antibiotic resistance.

Bacterial society is based on a chemical language called quorum sensing. To detect how many of its own species, or members of another bacterial species, are in the immediate vicinity, each bacterium secretes a certain molecule into the environment. The greater the number of molecules it can sense, the more fellow bacteria it knows are out there.

This is often a trigger to act. Some bacteria will attack a person or any other host only after establishing that there is a quorum -- a large-enough army to overcome the host's immune defenses. The strategy helps explain the virulence of a number of human ailments, including cholera, pneumonia and food poisoning.

Dr. Bassler was the first to identify the molecule that bacteria use to communicate with members of other species. She hopes the finding will lead to a new kind of drug that won't succumb to antibiotic resistance.

Resistance is a serious and growing health risk across the world. It occurs because most antibiotics are designed to kill bacteria. But some bugs survive the attack and pass on their resistant genes to their progeny, strengthening future generations and making the antibiotic less effective.

Instead of killing bacteria, Dr. Bassler wants to simply jam their communication lines -- the quorum-sensing mechanism. She figures that if the bugs can't signal each other, they can't properly assess the size of their growing army and might never attack. Another benefit: Because bacteria aren't killed, the approach could delay the onset of resistance.

To continue reading the article click here

Original article can be found at http://online.wsj.com/article/SB125236107718690619.html?mod=googlenews_wsj

Some people work (for me) on Labor Day

Wouldn’t you know it! It is my big day to chat with you and Ronnie steals my thunder. After all, I am the one writing on Labor Day, and Ronnie chooses the day BEFORE Labor Day to tell you all about it.

As a matter of fact, I should not be working at all today according to the history and information he shared with you yesterday, so I won’t. Instead of sitting down and beating out an informational tidbit, I will share with you the some of my joys about today. I can sum it up in two words, family and fun. We are in Florida and enjoying some time with some of my Mom’s side of the family and the Florida beach and sunshine. The latter is a hope for, as in Florida any day can include both sunshine and a downpour all within an hour of each other, only to have the sun pop out again and just makes things a bit steamier. Yes, that is something that is a bit hard to get used to, for Arizona is not exactly the steam bath area of the world. We have been joined here by my brother and his girlfriend, both also from Arizona, so we are all smiling and sweating together.

My Grammy's house in St. Augustine Beach, FL

The beach has been a great place to get that morning walk/run in and the scenery is just a tad different than that we see when we do our “daily” at home. Somehow it doesn’t seem so much like exercise as an adventure. We walk, jog and run on a strip of white sand that is so packed that cars drive on it as if it were a paved road. One of the nice things is…we are only two of many that are doing the same thing. Misery loves company! When the exercise portion of the morning is done we limp home wearily and wet with sweat. The latter describes Ronnie, for being the lady I am , I perspire. We head for the pool to cool off and let me tell you, that is a shocker. At home we get into a tepid if not just plain warm pool to loll about. Here, we jump in, gasp, have second thoughts an even third, but it is delightful once you get used to the feel of ice cubes surrounding you. Florida nights are getting cooler and so is the pool water. St. Augustine is in northern Florida and yes, they do have seasons, so it is not balmy breezes the year round and the temperature of the pool water is testimony to that fact.

A relaxing stroll down the beach

Strolling down St. George’s street in the oldest community in the USA is another way of giving our new sneakers a workout. Fudge and French pastry makes those morning jogs a necessity not only for clearing the airways, but for taking off the bulge that could appear in one heck of a hurry. Because my Grammy is not in love with the kitchen and her stove, we are also walking off the effects of too many evenings of eating out and not always choosing the most lean item on the menu. Getting back in the groove when we get home will hopefully take care of that. Don’t worry about Ron’s weight dropping this week.

St. George Street in downtown St. Augustine

Since it is my day off and Ronnie has already told you everything anyone would ever want to know about the holiday, and since the beach and family are waiting, I will just say….Happy Labor Day. Enjoy the time with family, friends, and the fact that the alarm clock did not have to go off this morning for most of the working force. If you do have to work today…Thank you for being there for us.

Ronnie's getting old...

I promise to be back on the job next week and Mandi’s Monday Musings or Meltdowns will be more like the usual thing.

Now for true confessions… I will have to be very honest with you…Mandi didn’t write this at all! She is in bed sound asleep, for after all it is Labor Day, and being the loving Grandmother that I am, I am filling in for her. If it seems a bit different than her regular notes to you just factor in the difference that 57 years makes!

From left to right: Mandi, Josh, Chrissy, Susan (aunt), Grammy, Ronnie

Note from Mandi: ...when I woke up this morning, my Grammy gave me this little surprise! She is one of RSR's biggest fans and reads every day. There is no place like my Grammy's home and no one sweeter than my Grammy. This is one of my favorite places! And since we can work from anywhere, we decided we'd work from FL for a few days and then spend the holiday weekend playing with my brother and his girlfriend, Chrissy. It's been incredible to catch up on some sleep and enjoy a weekend solely relaxing...

Chrissy and Josh

Tell me what you did on your day off...

We're obviously super excited to be here :)

Girl Runs a 5k at 11% Lung Function

Here's yet another reason why I have no excuse...

A young woman who needs a life-saving double lung transplant is taking on a challenge of a lifetime today when she attempts to complete part of a five kilometre run.

Jessica Wales is taking part in the Adidas Challenge in Hyde Park, London, but has decided to walk it to ensure she has a better chance of hitting her target.

She suffered a deadly chest infection in April, and is now battling for survival.

But the brave 20-year-old is taking on this physical challenge to raise money for the transplant charity Live Life Then Give Life, known as LLTGL.

Jess, from Westgate in Thanet, was born with cystic fibrosis, the UK’s most common genetically inherited life-threatening disease.

Its devastating progression means her lungs are now useless and completely beyond repair, so a massive transplant operation is her only hope.

They are functioning at a mere 11 per cent of their capacity.

She now relies on an oxygen supply 24 hours a day and a non-invasive ventilator to keep her lungs going when they regularly start to tire.

So it will be against all the odds for her to finish the challenge, which for her will be gruelling.

Jess in unable to even wash her own hair or put on her own socks, so walking any distance will be a huge physical strain.

She is hoping to walk at least 200m per kilometre, with the total aim of walking one kilometre out of five.

LLTGL chairman Emily Thackray said: “Jessica has been waiting for her new lungs for over four years now and already doubled the two years predicted survival she was given by the doctors back in 2005.

“It is heartbreakingly sad to think that this amazing girl may well not be here to see her 21st birthday.

“The work she continues to do to raise awareness for organ donation is incredible; she is a true inspiration.”

Jess said: “A lung transplant for me will be literally life changing. It will mean the whole world to me.”

She wants to raise money for the specialist Cystic Fibrosis unit at Kings College Hospital in London, where she is a patient.

Jess said: “It is vital that cystic fibrosis sufferers receive the appropriate healthcare to ensure a better quality and length of life.

“The CF unit at Kings College Hospital provides a home from home for those frequent and often lengthy stays and all proceeds will be donated to the centre to help others like me.”

Jessica will be accompanied by a team of specialists from Kings College Hospital, to support her throughout the event.

Cystic Fibrosis is one of the UK's most common life-threatening inherited diseases which affects over 8,000 people by attacking internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus.

This makes it hard to breathe and digest food.
Each week, five babies are born with Cystic Fibrosis and three young lives are lost to the disease.

**Original article can be found at http://www.kentnews.co.uk/kent-news/Battling-Jessica-puts-her-best-foot-forward-today-newsinkent27790.aspx

Pretty awesome huh?

Why Don't We Work on Labor Day???

I wanted to do something a little different for this Spotlight Sunday. Instead of spotlighting another blog/person/article, I wanted to put the spotlight on a holiday. I bet you can't guess what day I'm referring to...ok, maybe you can. If you were thinking Labor Day, you'd be correctomundo. To be honest with you guys, I had no idea why Labor Day started, when it started or who started it, so I dug up some info and thought I would share it with you guys. I've got to assume that I'm not the only person that was confused as to why this is a holiday.

The History of Labor Day

For other Labor Day information, visit our Labor Day 2009 page.

Labor Day: How it Came About; What it Means

Labor Day, the first Monday in September, is a creation of the labor movement and is dedicated to the social and economic achievements of American workers. It constitutes a yearly national tribute to the contributions workers have made to the strength, prosperity, and well-being of our country.

Founder of Labor Day

More than 100 years after the first Labor Day observance, there is still some doubt as to who first proposed the holiday for workers.

Some records show that Peter J. McGuire, general secretary of the Brotherhood of Carpenters and Joiners and a cofounder of the American Federation of Labor, was first in suggesting a day to honor those "who from rude nature have delved and carved all the grandeur we behold."

But Peter McGuire's place in Labor Day history has not gone unchallenged. Many believe that Matthew Maguire, a machinist, not Peter McGuire, founded the holiday. Recent research seems to support the contention that Matthew Maguire, later the secretary of Local 344 of the International Association of Machinists in Paterson, N.J., proposed the holiday in 1882 while serving as secretary of the Central Labor Union in New York. What is clear is that the Central Labor Union adopted a Labor Day proposal and appointed a committee to plan a demonstration and picnic.

The First Labor Day

The first Labor Day holiday was celebrated on Tuesday, September 5, 1882, in New York City, in accordance with the plans of the Central Labor Union. The Central Labor Union held its second Labor Day holiday just a year later, on September 5, 1883.

In 1884 the first Monday in September was selected as the holiday, as originally proposed, and the Central Labor Union urged similar organizations in other cities to follow the example of New York and celebrate a "workingmen's holiday" on that date. The idea spread with the growth of labor organizations, and in 1885 Labor Day was celebrated in many industrial centers of the country.

Labor Day Legislation

Through the years the nation gave increasing emphasis to Labor Day. The first governmental recognition came through municipal ordinances passed during 1885 and 1886. From them developed the movement to secure state legislation. The first state bill was introduced into the New York legislature, but the first to become law was passed by Oregon on February 21, 1887. During the year four more states — Colorado, Massachusetts, New Jersey, and New York — created the Labor Day holiday by legislative enactment. By the end of the decade Connecticut, Nebraska, and Pennsylvania had followed suit. By 1894, 23 other states had adopted the holiday in honor of workers, and on June 28 of that year, Congress passed an act making the first Monday in September of each year a legal holiday in the District of Columbia and the territories.

A Nationwide Holiday

The form that the observance and celebration of Labor Day should take were outlined in the first proposal of the holiday — a street parade to exhibit to the public "the strength and esprit de corps of the trade and labor organizations" of the community, followed by a festival for the recreation and amusement of the workers and their families. This became the pattern for the celebrations of Labor Day. Speeches by prominent men and women were introduced later, as more emphasis was placed upon the economic and civic significance of the holiday. Still later, by a resolution of the American Federation of Labor convention of 1909, the Sunday preceding Labor Day was adopted as Labor Sunday and dedicated to the spiritual and educational aspects of the labor movement.

The character of the Labor Day celebration has undergone a change in recent years, especially in large industrial centers where mass displays and huge parades have proved a problem. This change, however, is more a shift in emphasis and medium of expression. Labor Day addresses by leading union officials, industrialists, educators, clerics and government officials are given wide coverage in newspapers, radio, and television.

The vital force of labor added materially to the highest standard of living and the greatest production the world has ever known and has brought us closer to the realization of our traditional ideals of economic and political democracy. It is appropriate, therefore, that the nation pay tribute on Labor Day to the creator of so much of the nation's strength, freedom, and leadership — the American worker.

**All information presented is from http://www.dol.gov/OPA/ABOUTDOL/LABORDAY.HTM

So did that clear things up? I hope so. Now go enjoy your extra time off.

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".