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“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/

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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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“Tired of All The Drama Surrounding the NFL’s National Anthem? Here’s How to Survive It”

 

saints

Are you sick of the drama? Me too.

Social media has literally changed everything in our country. It is the fuel of any online forest fire. With most people on facebook and some on twitter, issues get blown way out of proportion.  Where before we were somewhat open minded, tolerant and respectful, the world now laughs at us for being childish, close minded, ignorant, and drop outs for anger management. Some are so hyper sensitive, even the smallest things can set them off. Honey Boo Boo’s reality show looks like Masterpiece Theater compared to what is happening now in America.  The mantra in the U.S. today is, think as I do or you are an idiot. I thought people were supposed to get smarter with age?  Instead many are more aggressive and close minded as ever.  Are you sick of it?  Let’s look at how we can survive all of this Jr. High School drama.

How To Survive This Drama:

  1. Be Open Minded:

Good leadership is so rare in our country because most can’t do 4 things; listen, understand, be compassionate and compromise. If you can’t do these 4 things, you can never be a great leader.

In this situation I totally respect and understand both sides. I think both have good and bad points. If you listen and understand people’s feelings in a rational manner without acting like a hot head, you can get that both sides have valid thoughts and a compromise can be reached.  If we respected each other’s opinions, we could see both sides.

  1. Don’t talk about it or react online.

When people talk about it online, I just move on. Everyone says the same thing over and over and I’m pretty sick of it.   The media is loving this. They now show the national anthem as if it was a game itself. And oh the commentary.

I’m not a drama guy so I don’t get off on it. I’ll avoid it and watch the game. I don’t care what some jock, ex jock, celebrity or team owner has to say about the situation. I don’t know them and they are not my role models. I don’t look up to them for moral or spiritual leadership. And for all the love he is getting, I especially don’t look up to Jerry Jones. Just look on the internet to Jerry Jones history and partying ways. Character is what you do behind closed doors, NOT what you do when you know everyone is watching.

So many are nasty online and if you engage with them, you are just going to make yourself crazy.  On Facebook just keep scrolling.  Even if it’s a friend or even if you are asked what you think, just move on.  People no longer want to talk about things so they can get others viewpoints.  All they want to do is have people agree with them, or to attack those that don’t.

Texans Patriots Football

  1. Stop debating with those that are close minded:

Remember that a lot of adults today are close minded and it really comes out online. Two thirds of the country blindly back either the Republican or Democratic party like cult members, and the final third of the country is shaking their heads.  Social media has also made us all feel very self important; especially through our viewpoints. For many their biases and prejudices from their parents have really stuck to them.

I remember being 18 and my father trying to tell me how to vote in my first election.   I told him I’d listen to him but I’d vote how I felt I should. My dad liked that I stood up to him and thought for myself.  My parents told me to always do what is right even if the world is going the other way.  When you deal with facts and what is right or wrong, you realize you should not trust ANY politician or ANY political party. Just look at history.  In fact it sounds ignorant and naive to me to trust these people.

AVOID talking to biased people about this situation like the plague. NO GOOD can come from it. You cannot debate them or reason with them. They will not listen to you and they think if you don’t think like them then you are an idiot. I personally listen to everyone but I also realize talking to a rock is pointless.

lions

Jims Jamz:

First off I have several relatives and friends that have and are serving in the military. That’s from WWII, to Vietnam, to the Gulf War to the Iraq War.  They fought for the very rights and freedoms that we have today and I’m extremely proud of all of them.  As some of them say, one of those freedoms they fought for is the freedom to protest.  I would like the players to stand up but it’s not a big deal if they don’t.  I don’t look to them to set my moral standards.

Our country was founded on protest.  Many of the same people ripping on the players now are the same families that called people against the Iraq war Commies, un-America traitors, and many even thought they should be charged with treason. A total of 93% of Americans were for that war when the 7% were right.  History. Those who forget the past are condemned to repeat it.

And as I watch the amazing Vietnam series by Ken Burns on PBS, I see the millions of people of all ages; including soldiers and ex soldiers; who protested a war that was motivated for all the wrong reasons.  The day after the Kent St. murders, millions of students across the country protested on the streets and highways of our country demanding justice in an unjust war.  Millions of mothers, fathers and ex military protested on Washington and other areas to bring our brave young men home.  They were so passionate and loud that President Nixon listened.  He had to.  If you haven’t watched it you should.  It has inspired me and brought a new respect for those of that time that fought, and for those that fought to bring them home.

cowboys anthem

The National Anthem issue hasn’t affected me in any way. If fans feel they need to burn their jerseys and not go to games or watch, then I respect that. If players and fans want to protest racism and other issues then I support that too.  THIS IS AMERICA!  When did we lose the right to do what we wanted?  When political parties infused into the older generations that they were perfect, that’s when.

What is funny is that many of the people that are burning jerseys, are white and I don’t think that is a coincidence.  If you never experienced racism and you live in a non sensitive society like we have today, you are not going to understand the issue or the feelings.  And some that are for the protesters have little to no knowledge of the sacrifice of the military and their families.  Remember those 4 points of leadership I had? If both sides would follow that, they both would understand each other.

I think the players are misunderstood as well. They don’t hate America; right or wrong, they think this is the loudest way of protesting the lack of justice and racism that they see in our country today.  I guarantee if dozens of rich white people were unjustly killed by cops in rich areas around the country, caucasians would be outraged and wonder what is going on!

If you are sick of the pettiness, anger and dramatics of this issue and you just want to watch football, then do it. Personally I don’t see any change coming from this, only more division. Change is only found with dialog and compromise; something most adults are no longer willing to do in America. Men’s ego, close mindedness and greed has screwed up so much in the world and the NFL is no exception.

Our love for Patriotism is strange.  While some scream USA and say respect the flag, almost half of people that can vote don’t.  Corporations take jobs away from Americans just so they could get slave labor wages overseas so more generations of trust fund babies can be taken care of.  On the other hand, many that are kneeling during the Anthem have never done much of anything in their lives in regards to fighting for people’s rights.  Many of them now talk like they are civil rights experts when in reality they have a lot to learn.

So in ending, in true GOOD American fashion, I say respect people’s view points and then YOU do what you think is right.  I for one will continue to worry about the X’s and O’s and still watch the NFL while respecting people’s rights to be angry at the players, and the players right to protest.  I’ll also greatly respect those things that our country holds dear, but THAT IS MY RIGHT.  If you do what you think is right without berating others that disagree, you will not only be a good American, but you will also be rid of the drama.