Tag Archives: uk

“How One Cystic Fibrosis Patient is Thriving & Not Just Surviving; The 29 Year Journey of Livvy”

*Please Follow Livvy on Instagram, Twitter, and her popular blog:

https://www.instagram.com/seabreezecorner/?hl=en

https://twitter.com/seabreezecorner

https://seabreezecorner.com/about-me/

*Please follow the Cystic Fibrosis Foundations of the U.S. & the U.K.

https://www.cff.org/

https://www.cysticfibrosis.org.uk/

 

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southport lord street
Southport in Merseyside, England

In the beautiful seaside city of Southport in Merseyside, England, a scared 13-year-old girl first became aware of a monster that was literally attacking her. After begging her parents to take her home, she stayed in the hospital for days.   At a time when Olivia; or Livvy as her friends and family call her; should have been thinking about cute boys and spending time with her friends, she now realized that she was in for the fight of her life.

livy hospital

Livvy found out she had Cystic Fibrosis. Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits a person’s ability to breath. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. Year’s ago it was a death sentence with many passing away in their teens, but now the lifespan has been increased to 50 y/o with research increasing that number every year. In the U.S., famous former NFL Quarterback Boomer Esiason started a CF foundation that has raised millions for research after his 2-year-old son Gunnar was diagnosed with the disease. Gunnar is now 26 and is an advocate for CF with a fantastic website. Below are both websites to these highly regarded advocates.

https://www.esiason.org

http://www.gunnaresiason.com/

Blausen_0286_CysticFibrosis (1)

Growing Up With CF:

“I grew up an only child,” Livvy explains. “And that was mainly because my parents were afraid they’d have another child with CF. The kids at school never teased me but I was in the hospital every 3 months, which made it hard to make close friends. When people tried to get me to tell them what was wrong with me, I’d always tell them I had an asthma condition”.

When you have CF, it is a constant stress in dealing with the people around you as well. “I got my first boyfriend at 16 and even though he understood my disease, he kept it away from his parents fearing they would no longer allow him to see me.   When he would visit me in the hospital he would have to lie about my condition. I’m 29 now and I have an understanding boyfriend but I still feel a pressure from his family thinking I’m not good for him because I can’t have any kids”.

livvy

Not only do patients have to fight the stigmatism of having a terrible disease, but they also have to endure a daily ritual of medications and treatments. Few diseases take this much effort to keep oneself healthy. Another characteristic of CF is low body weight and depressed growth. Many with CF look much younger than they are due to this factor.

livvy hospital

The Daily Battle:

The daily routine for a CF patient is a grind that can’t be compromised. “I wake up hopefully after a good night’s sleep” Livvy says. “A good night for me is waking up twice to cough up mucus off of my chest. A bad night is when I wake up every hour, or not being able to sleep at all due to the coughing”.

Treatment starts right after she wakes up as she takes 2 medications through a nebulizer called an eflow, which delivers the medications rapidly. This takes half an hour. She then has to try and do breathing exercises to bring out more mucous which seems never ending. She then takes another type of inhaler and tries to get a bite to eat. “I also have CF related diabetes which makes eating consistently really important”. After breakfast she takes more medications, which includes prednisone, which helps her breathing, but it can worsen her diabetes and thin her bones.

e flow nebulizer
Something Livvy has discovered is that being physical fit and going to the gym for an hour a day is essential for improving her health. “I have to go every single day or my lungs suffer because of the mucous buildup. When the mucous starts to build up it’s just like I’m drowning. I do mostly cardio on a treadmill, an incline, or a rowing machine, as well as lift weights. When I return home I eat a high caloric lunch to keep my weight up and drink an Ensure supplement”.

The rest of Livvy’s day is an interval of taking medications to keep her lungs open and to eliminate the mucous, which makes breathing easier.   In between these treatments it’s also important to continue to eat enough calories to keep her weight up, and then checking her insulin to make sure it’s at a normal level.

”I hate going into the hospital for a 2 week course of IV therapy, which mentally can wear me out. Even though I am lucky enough to be able to drive home between treatments, I do have to sleep there. That leaves a lot of time by myself as we all have our own rooms on the CF ward”.

The UK Drug Controversy:

http://www.pmlive.com/pharma_news/nhs_england_to_vertex_come_clean_on_orkambi_offer_1244686

Whenever profits are placed over patients, the patients always lose. Such is the case for the latest CF drug that has not been released in the UK yet because the drug company and the governmental agencies are fighting over a price. The patients that need the medications wait and can only hope of getting a drug that could greatly help their condition while rich people in suits push papers and look at dollar signs. The drug companies obviously want to get every pound or dollar that they can out of the selling of the drug, and the governmental agency wants to pay as little as possible. “All I hope is that I don’t die before the drug is finally approved” says Livvy.   “On bad days my lungs are bordering on now needing a transplant and I get frustrated. It’s ok to have a bad day and to feel bad, but you have to rebound. I can quit or just keep working hard to keep as healthy as possibble and try to be positive. I choose the latter”.

(below is a video of a day in the life of a CF Patient)

https://www.youtube.com/watch?v=qmzvCnt5cHA

livvy final

A Positive Outlook:

Livvy, like so many CF patients, is an inspiration. Their positive outlook against a terrible foe touches and motivates many around them. She has a growing Instagram and Twitter page as well as a positive and fun blog where she shares her life and her story. “If you have CF”, encourages Livvy,”then PLEASE exercise and work out every day. Also you need to have dreams.   I want to get a house with my boyfriend and work on the side part time, or even volunteer. CF patients find it very hard to work full time but right now I’m working on being as healthy as I can be”. Presently Livvy gets the UK version of what we call disability in the U.S.   She is close to her family and looks to grow her online fingerprint while improving her health.

Livvy’s health sometimes can wear her out physically and mentally. “I’ve struggled at times and it is hard to do so much to just keep my health at a stable level.   Sometimes I worry if I will ever get to use the new medication that I know would help me. What I am going to do though is keep fighting, and keep doing what my doctors tell me to do. I want to be a warrior, and not a worrier”.

livvy dog
Livvy celebrates her dog’s 11th birthday

About 16 years ago a young 13-year-old girl first saw the monster that was attacking her. Through perseverance, hard work, and great determination, she now is a lovely adult woman looking ahead to the future. It’s definitely not easy at times but she fights for every breath and every moment. With her family and friend’s support and the help of her medical team, my money is on Livvy. She is proving to be a small package of heart and spirit who is taming her goliath with a positive energy and a smile, while inspiring others along the way. A CF Warrior indeed.

 

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“Raider Fans Are Unique; Outrage Over ESPN Sport Reporter Britt McHenry & a 2nd Incident Emerges; and My Own Run In With a Yahoo Reporter”

britt_mchenry

“Raider Fans Are Unique; Outrage Over ESPN Sport Reporter Britt McHenry and a 2nd Incident Emerges; and My Own Run In With a Yahoo Reporter”

Raider fans are always there for each other.

From fundraisers, to support with tragedy, to straight up money. Over the years I’ve seen Raider fans do some amazing things for each other.  It’s just a special thing to be a member of the Oakland Raider family; some people will never understand it.  You may have a team but we have a family.

I remember speaking at a conference back east. I was invited to a fancy buffet and after dinner drink party that night with mostly people from the east coast including many from New York, especially Manhattan.

I’ve dealt with a lot of people from Manhattan and they can be rough.  (In fact this isnt a knock on New Yorkers; this could be anywhere in the U.S. really). I blocked a few on Facebook because they were embarrassingly arrogant and self absorbed.  You are seeing more and more people these days with this, “I’m better than everybody else complex”.  Paris Hilton would be proud.

Anyway, one of the doctors and his young female friends were talking about how amazing it was to be a New York Giants fan and how sophisticated the fans were. They asked me who I followed and I said I was a Raiders fan.   Many laughed and said, “don’t you feel uncomfortable rooting for a team that is so ghetto?”. I asked them what they meant and they said it seemed like most Raider fans were middle to lower class, vulgar and they belonged more in a burger joint than in a nice restaurant.

A lack of confidence has never been a weakness of mine so I laughed and said, “First of all I like a burger sometimes; especially with bacon; and second of all what’s wrong with good hard working people who love their families?”

I was kind of taken aback to be real. Many bragged about how rich they were and one even bragged about the Mercedes he just bought. I said that it was a pretty nice car and another young woman quipped, I have one too. I said, “you have one too?”. She laughed and said, “doesn’t everyone?”.

It made me realize that there really is a class warfare going on in our society. It also reminded me why I’ve always enjoyed the diversity in the Oakland Raiders fan base. No fan base has as many different people than the Oakland Raiders.  It doesn’t matter what color you are, or how much money you have, because we all are on the same team. You may think that’s the norm but it’s not.

I remember also at the convention that one of the nurses that bragged about her Mercedes wanted to get together after the last night of the convention. I told her that I didn’t think it was a good idea for a sophisticated Giants fan from Manhattan to be seen with a ghetto low life Raider fan. She laughed. I didn’t.

I’ve been to many games in many cities and its shocking. In some stadiums you can count the minorities in the stands with two hands.  Many stadiums cater to the rich and they’ve priced out middle class fans and especially poorer ones.

On Monday night I remember being at a store at 11:30 pm. I was exhausted from work and was going in to get some snacks and I saw a woman broken down in an old truck. She had two Raider stickers in the back of her cab.  I could see people avoiding her so they wouldn’t have to help her. No one parked near her. She was near tears and was with a kid. I walked up to her and asked what was the problem and she said her battery was dead. I have a starter in my car (an amazing purchase that everyone should have) and I said I’d start the car. In a few seconds we started her car. When she offered me some money I refused and I smiled and winked and said Raider fans need to stick together.  She just started laughing and said Go Raiders!

As a Raider fan I was taught to respect everyone. Doesn’t matter who they are, what color they are or how much money they have. That’s why yesterdays narcissistic rant by ESPN reporter Britt McHenry berating a tow truck employee was so vile. Funny thing is this wasn’t her first rant and she’s still in her 20’s.  More later.

McHenry is the classic new hire you see at ESPN. She’s a very pretty and educated person, who loves the sound of her own voice and loves getting any and all attention she can get, especially from men.   The classic eye candy that ESPN has gone to. At Fox news I think being blond and pretty is in the job description so they are following suit.  Obviously I’m sure she’s had a lot of breaks and a lot of people helping her along the way.

I remember a local reporter being hired by ESPN. She said instead of being trained on how to do a broadcast or interview, she spent the first two weeks of her employment……GETTING A MAKEOVER!   They dyed her hair blonder and gave her highlights. They told her how to dress and how they were going to do her makeup and she looked different. Much more sexier than she was used to, but it was the NEW ESPN that has shown up in the past 5 years.   Look at all the anchors. Some even wear dresses that you see in clubs.

McHenry I’m sure is used to doing whatever she wants in life. She’s obviously very pretty and these days men practically are holding themselves when they see a pretty girl. Watching men stare down women and lose their minds over a pretty face makes me embarrassed to be a man sometimes.  Women begging for attention and men giving it.  A study last year even showed women who are very pretty or big chested, get better paying jobs.  It’s amazing.  Stay classy.

She is like a lot of tv personalities in that they do google and twitter searches on themselves so they can read what people say about them. Well she read a blog with a young female lawyer who was trying to stick up for women, saying that women should be hired for their talents on television and not their looks. For some reason, the clueless McHenry attacked the woman.   She said she was a model, got a masters in 3 years and was pretty much all that. She again, began to berate the woman saying she was pretty much a jealous low life and that perfect women like Britt did exist.

http://incidentaljustice.blogspot.com/2015/03/i-was-attacked-by-espn-reporter-for.html

Britt McHenry is a part of a big problem at ESPN, sports, and our country. People thinking they are just better than others.   When you think you are better, you lose all compassion for that person.  Britt McHenry was not losing it; she just was showing who she really was. It looked like she left her car there overnight after a date or whatever; and they towed the car.  To bully and cut down another human being acting like you are so much better than she is was atrocious. The second you think you are better than someone, you lose all respect and empathy for them.  Other female reporters are coming out saying McHenry loves to play the,”I’m on ESPN and I’m more important than you are” card an awful lot.

Bill Simmons, the famous reporter stated that the NFL brass and commissioner Roger Goodell lied about the Ray Rice situation. He was right; they did lie. They changed their story 3 times and if it wasn’t for TMZ sports, nothing would have ever happened.

The NFL didn’t like that. A call was made to ESPN and Simmons was suspended for 3 weeks; FOR TELLING THE TRUTH. Britt McHenry was suspended for a week for berating another human being like she was a desperate housewives reality show participant, and the tow company attendant was one of her servants.

ESPN has greatly changed like much of our society unfortunately. The shallowness and pettiness of people is beyond measure.   You see people losing their lives over petty arguments due to adults who can’t control their temper. You see the nastiness online with many vile comments when someone is suicidal and the bullying is still a huge problem online and every where else.

Athletes get passes and excuses from fans for terrible crimes against women because they can play a sport; and celebrities can pretty much do what they want knowing that the courts and society will support them because they are good looking and famous.   It’s sheer madness.

McHenry is a narcissistic bully. She’s gotten by in life due to a pretty face and a killer smile which in today’s society will get you far; very far. That or sex tapes. Ask Kim Kardashian.

I had my run in with a very pretty Yahoo tv sports personality last year. I forget her name but she does the Yahoo fantasy sports.   Sometimes she dresses like she’s going to a club, and once on air I saw her twirling her hair……TWIRLING HER HAIR!

She did a story on a poor young Russian athlete who broke her back and was paralyzed.   The girls friends and family were heartbroken.  During the report for some reason she kept giggling. On twitter people ripped on her and couldn’t believe it. I tweeted her and told her that she just needed to be more professional when telling a sad story; television journalism 101 really. She wrote me back that she was a beautiful person inside and out and that people loved her. She shouldn’t have done that because the twitterverse steam rolled her.

To her credit she apologized for her actions after dozens of people blasted her. She said she realized it was unprofessional and that she needed to think about the stories she was doing and not just read them.   I appreciated her apology but wow; it took people on twitter to teach her that?

Britt McHenry is not going to change. That is who she is. But in my world neither will I. I will continue to respect everyone. One of my famous sayings that I use in speaking is “treat the janitors as good as the CEO’s”. If that is what being a ghetto Raider fan is, then I’m proud to be a part of the hood.

“Easy & Fast Decadent Shortbread”

shortbread three

“Easy & Fast Decadent Shortbread”

This is the fastest and easiest way I know to make amazing short bread cookies.  I used unsalted sweet butter and it is so tasty.  Eat it with my nutella hot chocolate, a cup of great coffee, or with a great brandy, cognac or glass of wine.  With a cold glass of milk, you are in heaven.

You can’t stop eating these amazing favorites!  I always try to make a double batch because they are so addicting!  Enjoy and save one for me!!

Ingredients:

  • 1 cup butter
  • 1 cup granulated sugar
  • 3 cups all-purpose flour

Preparation:

Cream sugar and butter. Add 2 1/2 cups of the flour and mix thoroughly. Turn out onto a surface floured with remaining 1/2 cup of flour. Knead dough until it cracks on surface. Roll out 1/4-inch thick and cut out with cutters. Prick cookies with fork tines and place on ungreased cookie sheets. Bake at 275° for about 45 to 55 minutes, or until lightly browned.
Makes about 2 dozen shortbread cookies.

Suggestions: 

-I sprinkle a little sugar on the top of mine before baking.  I’ve even used colored sugar for a unique look.  This is not an overly sweet cookie; the key to the taste is the butter.

-Dont use margarine!

-If you dont eat them right away, let them cool and store in an air tight container and they will stay good for days.  I’m sure they wont last hours though.