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Posts Tagged ‘cystic fibrosis’

Prior to having a double lung transplant (the biggest surgery any person can have) my wife and I used to eat organic here and there. You know just to say we ate organic and try to trick our brains to think we did something healthy…not that we ate unhealthy a lot. However, after surgery we were told by the doctors and nutritionist to eat as much organic as possible.
Bottom line is they were trying to keep out any pesticides or foreign chemicals that would hinder the healing process or mess with all my medicine . We took heed to that suggestion, because the last thing you want is to find out something you ate made your body sick after having a $3M surgery!
We all know that eating healthy costs more. Organic foods are almost double what the non-organic food costs. Like bananas, organic from our store goes for $.99 lbs, non-organic is $.59 lbs. Being that potassium was and is needed for me, we buy a lot of bananas. We also know that organic foods don’t last as long, the bananas I get can go bad after about 4 days, non-organic about week. So we buy only 4 or 5 bananas at a time. I bet by now you’re tired of me saying bananas! OK moving on.
The cost of organic is higher simply because the crops don’t yield as much and the farmers tend to have a lot smaller crops over all. Have you ever seen a fruit or vegetable grove that goes for miles? Those aren’t organic and they have to use a plane in some areas to cover the crops in chemicals to keep the bugs away. Certified Organic farmers don’t use those harsh chemicals. The bugs that attack the organic farms are smarter, since they don’t eat chemicals, where is the other bugs that eat the chemical sprayed foods are more like the hippies from the 60’s. Lol just kidding
The same goes for eggs, milk, meats and packed foods. The choice to stay with this diet is flippen expensive, but the trade off is, knowing you’re eating better. For me, my body has been healing up well now. Not to say organic was the main factor, but I can say it certainly helps. By the way, organic milk tastes like it did when I was a kid.

Why am I posting this; it is because of the scare of listeria on the apples. Apples people! “An apple a day keeps the doctor away”. Hmm, not if it has a deadly bacteria. I don’t think I’ve heard of anyone getting sick from organic foods. But, it could happen. We wash all our fruits and vegetables prior to eating them, and so should you, regardless of where it comes from.

The best (in our opinion) fruits and vegetables come from a locally owned, organic farm. Because they know if they don’t produce good produce (did you see what I did there) they might find some of their cows tipped. Just kidding again. That actually hurts the cows, so don’t do it.

In closing, we all have choices to make when shoveling food in our pie holes, so do what you feel is right for you and enjoy!

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AS I was going through my old emails for some auditions I’ve had it was fun to walk down memory lane. Here are some of the emails I got and parts I’ve done.

From: “Fast & Furious Five Extras”
Date: Thu, 21 Oct 2010 17:15:51 -0400
To: Philip Webb
Subject: Vin Diesel Photo Double tomorrow

Hey Phil,

YOU ARE SECOND UNIT. and you are going to be one of the DOM PHOTO DOUBLE OPTIONS:
you’ll be wearing Vin Diesel’s clothes
@ 7:00 AM for Friday October 22, Location is in the warehouse behind the production office,
1*** HWY 138 NE CONYERS, GA 30013

————————————————————–

SSM & Talent agency
3*** Buckeye rd Suite # 527
Atlanta, GA 30341

October 16, 2010

Levi Jean Ad

Dear Philip Webb,

Thank You for your interest in Auditioning with SSM & Talent. We are a premier resource for aspiring Models, Actors/Actress and Talent. We are dedicated on helping promising models and talent to audition in front of the most prestigious agencies. You are cordially invited to an open audition. Please make sure you arrive on time and prepared.

——————————————————————————

From: “Emily Bates”
Date: Fri, 27 Aug 2010 17:09:59 -0400
To: ‘Philip Webb’
Subject: 30 Rock, Eps 501

Thanks! They are asking for a full body shot as well to see if you might match up with the others. Do you have a full body shot?

From: Philip Webb [mailto:webbinsc@att.net]
Sent: Friday, August 27, 2010 5:09 PM
To: emily@barbmcasting.com
Subject: 30 Rock

Hello Emily,

Thanks for the call. See you in NY at 30 Rockefeller square.

———————————————————————

From: Alexis Scheu
To: webbinsc@***.net
Sent: Mon, August 9, 2010 11:30:11 PM
Subject: Re: Jack & Jill Audition – Adam Sandler Double

59** W. Slauson Ave
2nd Floor
Los Angeles, CA 90230

———————————————————————-

David Manigault
To Me
Subject: Audition

Oct 14, 2010

Official Casting Date

You recently submitted for a role in the movie “Who Can You Trust”, You have been selected to read for the part for which you applied. Please arrive at least 15 minutes prior to reading time so that you will have time to read over the portion of lines selected for your character.
Date: October 23, 2010
Time: 12pm to 5pm
Address: 3500 Boston Street

————————————————————————

Hope you enjoy!

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Miami Dolphins Reportedly Exclude CF From Health Plan, Fire Scout For Working At Home To Care For Wife With Disease

Posted by: Michael Nace in News 1 day ago 0 189 Views

According to an exclusive report from Fox Sports 1, a scout for the Miami Dolphins is considering a lawsuit for allegedly being fired as a result of telecommuting to work in order to care for his wife who has Cystic Fibrosis, after recently losing healthcare coverage for her expensive CF treatment. According to Alex Marvez at Fox Sports, who broke the story, Nate Sullivan, a scout for the team for 17 years, was let go by new General Manager Dennis Hickey, who was purportedly dissatisfied with Sullivan’s working arrangement with the team — one that the organization agreed to previously in order to allow the scout to care for his ailing wife.

Marvez reports that Sullivan’s previous working arrangement, which began in 2004 when he and his wife moved to Central Florida to be closer to immediate family, has been agreed to and upheld by three previous General Managers for the team, including Rick Spielman, Randy Mueller, and Jeff Ireland. Sullivan reports that when he was fired by incoming GM Hickey, he was told that Sullivan’s arrangement to work at home in order to care for his wife ”just did not work for him.”

According to an intent-to-initiate-litigation document sent to both the Dolphins and the NFL that Marvez and FoxSports exclusively obtained for their report, Sullivan and his attorney claim that his firing was not the first alleged action that discriminated against treating and supporting those with Cystic Fibrosis. The letter states that the team’s healthcare plan was revamped in April and specifically excluded coverage of Cystic Fibrosis therapies in the new policy. As a result, Sullivan’s out-of-pocket cost for his wife’s CF medication has gone from $10 a pill to $3,000.

The report on FoxSports adds that, while Nate Sullivan would ultimately like job and healthcare coverage restored, that he is prepared to seek damages from the team and NFL if the situation is not rectified, citing that the Dolphins may have violated the Americans with Disabilities Act. Jason L. Harr, Sullivan’s attorney, notes that Title 29 of the Act specifically states “it is unlawful for a covered entity to exclude or deny equal jobs or benefits to, or otherwise discriminate against, a qualified individual because of the known disability of an individual with whom the qualified individual is known to have a family, business, social or other relationship or association.”

Miami Dolphins Reportedly Exclude CF From Health Plan, Fire Scout For Working At Home To Care For Wife With Disease

Posted by: Michael Nace in News 1 day ago 0 189 Views

According to an exclusive report from Fox Sports 1, a scout for the Miami Dolphins is considering a lawsuit for allegedly being fired as a result of telecommuting to work in order to care for his wife who has Cystic Fibrosis, after recently losing healthcare coverage for her expensive CF treatment. According to Alex Marvez at Fox Sports, who broke the story, Nate Sullivan, a scout for the team for 17 years, was let go by new General Manager Dennis Hickey, who was purportedly dissatisfied with Sullivan’s working arrangement with the team — one that the organization agreed to previously in order to allow the scout to care for his ailing wife.

Marvez reports that Sullivan’s previous working arrangement, which began in 2004 when he and his wife moved to Central Florida to be closer to immediate family, has been agreed to and upheld by three previous General Managers for the team, including Rick Spielman, Randy Mueller, and Jeff Ireland. Sullivan reports that when he was fired by incoming GM Hickey, he was told that Sullivan’s arrangement to work at home in order to care for his wife ”just did not work for him.”

According to an intent-to-initiate-litigation document sent to both the Dolphins and the NFL that Marvez and FoxSports exclusively obtained for their report, Sullivan and his attorney claim that his firing was not the first alleged action that discriminated against treating and supporting those with Cystic Fibrosis. The letter states that the team’s healthcare plan was revamped in April and specifically excluded coverage of Cystic Fibrosis therapies in the new policy. As a result, Sullivan’s out-of-pocket cost for his wife’s CF medication has gone from $10 a pill to $3,000.

The report on FoxSports adds that, while Nate Sullivan would ultimately like job and healthcare coverage restored, that he is prepared to seek damages from the team and NFL if the situation is not rectified, citing that the Dolphins may have violated the Americans with Disabilities Act. Jason L. Harr, Sullivan’s attorney, notes that Title 29 of the Act specifically states “it is unlawful for a covered entity to exclude or deny equal jobs or benefits to, or otherwise discriminate against, a qualified individual because of the known disability of an individual with whom the qualified individual is known to have a family, business, social or other relationship or association.”

At present, neither the Miami Dolphins nor the NFL have gone on record to the media about the issue, and it remains to be seen how both entities will characterize Sullivan’s termination and justify the revamping of healthcare coverage to exclude onto Cystic Fibrosis drugs from their policies.

The cost of CF therapies has been an ongoing story in the news as of late, as drug developers continue to make promising inroads into treating disease, but at a cost that patients, public health organizations, and the healthcare industry are currently wrestling with. In addition, while CF is a high-profile disease philanthropically supported by many world class athletes and celebrities, including veteran NFL quarterback Boomer Esiason, whose son has the disease, advocates are likely point to this new, unfolding scandal as ongoing evidence that more work needs to be done to raise awareness of the disease

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Hello Again! We wanted give you all an update on the last four months of medical and physical, not the turn your head and cough type of physical, but our physical location.

 In February we started a fund raising site called, www.gofundme.com/philipwebb  to also raise funds from friends and beyond, help pay for medical bill before and after transplant, plus to help us move out of our apartment in downtown L.A. With lots of great help from the family and friends we had a great start to the fund raising.

In mid-March I was hospitalized for a spot of pneumonia and spent two weeks on IV meds. Then in April I had a ton of tests done for the Transplant to update me status. My national transplant number went up slightly, which is good and bad. I don’t know for sure how much longer I have to wait or how many people are in front of me. So the wait continues!

Unfortunately, a few days ago I had an episode of coughing up a lot of blood and that automatically gets me a vacation in the hospital! I still feel good, but they need to monitor me and make sure it’s not going to turn into something worse. We’re hoping it’s not a full two weeks in here, oh yeah I’m writing this from the hospital, and hope I can be out very soon.

 

Thank You and God Bless

 

keck 5.17

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This is me with my kitty named Kiki, as in kitty kitty. She likes to cuddle up next to me and hug my arm.

This is good medicine!

We’re still in need of donations to help for transplant.  Will you help, go to http://www.gofundme.com/philipwebb

Thank you and enjoy life!

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Hello again.

This is just a quick post to try and get the word out about the online fund raising site.
http://www.gofundme.com/Philipwebb

We’re still a long way to go to help us with medical costs and living expenses.
Right now we are in need of moving out of our current apartment because it is not suitable or practical for me to be able to recover. Also it’s hard for me to go up and down all the stairs now and the air quality isn’t the best, being on a major road and near a highway.

Won’t you help and pass this along.  It will truly be a blessing!

Sincerely and God Bless,
Philip & Tinamarie

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Dying to Live

This is an expression that I have thought of many times in my recently. It’s almost an oxymoron in sorts as it seems people are dying to live every day, but certain things are failing them. In my realm the big problem is Cystic Fibrosis (CF). The disease I was born with and that affects just about…no it affects every organ in my body not to function normally, especially my lungs. And for most or all of the people born with CF, about 40,000 people in the US (but I think that number is low), have issues with their lungs. This disease has claimed the life of so many people, most of them young, too young. I’m 44 years old and I’m considered “old” for having CF. Do you know how much I hate to hear that? Most people in their 40’s, without CF, would say they don’t feel old or they still have a lot of living to do. For people with CF to reach 40 is a huge milestone, which sucks! This day in age with all the technology and money floating around, CF should stand for Cure Found. Great strides have been made in the past ten years on CF, with new drugs and devices to help people cope longer, but kids and adults are still dying every day from this nasty disease.

If CF researchers had half of what is donated to fight breast cancer or aids or even MS, I bet this disease would be put away for good. Perhaps it would be like Polio, the disease that killed and crippled tens of thousands, but now there is a shot you get as a kid and boom, hardly no one gets it any more. Not to ever put down people that have these other diseases, trust me, my mother went through breast cancer and survived, so I know how hard it is. But everyone knows about breast cancer and they have made huge leaps to find a cure and better medicine. I’m just saying the money that pours in for research for some of these other diseases is scary, compared to what little attention CF gets.

The one thing I hate to hear or read is people committing suicide or even overdosing. We all say, ‘No way, I can’t believe it, why?’ when we hear of a celebrity dying of an OD, like Philip Seymour Hoffman or Cory Monteith from Glee or a possible ‘mistake’ from too much prescription drugs, like Michael Jackson, Heath Ledger and the many others. Then there are the people that commit suicide and that just boggles my mind. Some may think, Celebrities have it all, money, fame and so on, but they are unhappy. My uncle Paul, whom I was very close to growing up and into my adulthood committed suicide. He wasn’t a celebrity and didn’t get national news, but it affected our whole family and his friends. To this day I still ask why did he do it. This brings me to my title of this blog, Dying to live. Most people with CF are dying to live. We struggle every day to breath and have a ‘good’ day, where we get to go out and have fun or even laugh. There’s a 14 year old boy who can’t go run around with his friends because he can’t breathe, there’s a 22 year old young lady who can’t plan a wedding because she’s in the hospital for the third time this year and it’s only February. There’s a 44 year old man that is using oxygen, listed on the transplant list typing this blog. We all have one thing in common, CF and we want to live!

This disease needs to be knocked out, put up on the shelf, checked off the list and flat out killed. The awareness of this disease needs to be spread around so others know what it is, what it does and how to help. We all have our issues in life, but there is always someone who is a little worse that could use a hand. Take a leap and help a huge population breath and live better, donate to the cure of CF.

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