Peace

"The New Colossus"

By Emma Lazarus

 

Not like the brazen giant of Greek fame,

 With conquering limbs astride from land to land;

 Here at our sea-washed, sunset gates shall stand

 A mighty woman with a torch, whose flame

 Is the imprisoned lightning, and her name

 Mother of Exiles. From her beacon-hand

 Glows world-wide welcome; her mild eyes command

 The air-bridged harbor that twin cities frame.

 

 "Keep, ancient lands, your storied pomp!" cries she

 With silent lips. "Give me your tired, your poor,

 Your huddled masses yearning to breathe free,

 The wretched refuse of your teeming shore.

 Send these, the homeless, tempest-tost to me,

 I lift my lamp beside the golden door!

 

 

At the base of the statue France gave us long ago, these words call welcome to the immigrants and refugees of the world. As the first American born member of my family, I am grateful my parents had the opportunity to come to this country. Each family here has immigrants somewhere in their family tree. Whether they crossed the Bering Strait, came in the Mayflower or arrived on an airplane like my parents did in the 50’s, we all hail from those who left home for this new world. With all the anxiety and fear this week has brought, it is hard to remember we were all welcomed in.  Praying for peace.

The end of an epidemic?

The last patient in Guinea has tested negative twice, so if no new cases pop up in the next 6 weeks, the epidemic will be over. The 21 day old girl, according to the BBC, was born the day her mother died of the disease, and if she survives, she will be the first baby to survive more than a couple of days beyond her mother's death.

The Ebola Epidemic that started over a year ago in Meliandou, a small village in south-eastern Guinea. There, a two year old boy, Emile Ouamouno, died after a fever, headache and bloody diarrhea. It was in December 2013, despite his family's best efforts, he died - followed within days by his three-year-old sister Philomene and their pregnant mother Sia. 

Since their deaths, over 11,000 people died in six countries and many survivors have suffered permanent harm.

There were heros.  One was Dr Ameyo Stella Adadevoh in Nigeria, who gave her life, but stopped the virus in its tracks there.

There were miracle drugs: Zmapp saved lives. TKM saved lives.

It is hard to believe two years will have passed by the time it is all over. Harder still, I am sure most people think it already is. Just as it took months for the world to realize there was a serious epidemic in Western Africa, the epidemic disappeared from the headlines long ago- no longer the top story, even as the deaths continued.

And the rebuilding has just begun.

Insurance, bah humbug!

Prior approval, prior authorizations and peer to peer reviews are all tools by which insurance companies:

A.      waste provider time

B.      avoid paying for things providers think will benefit their patients

I will also point out that peer to peer is a misnomer. An OB/GYN is not a peer to a Genetics doctor. Just because you have MD after your name, you are not magically endowed with the knowledge and experience to judge the care of other disciplines of medicine. In the same way you would not want my favorite Gastroenterologist delivering babies, I don’t want you telling my doctors they don’t really need a microarray.

This is a world where a patient well managed on a non-narcotic pain medication is told it is better to be on Oxycodone, because it is cheaper. Forget the addiction potential- it is all about the bottom line.

Medicine is hard enough without adding these obstacles. How can we provide the best care when somebody wholly uninvolved gets the final say on key decisions?

Is this the best we can do?

NASCAR CHASE and Champions

I have to ask you, NASCAR, if this is how you imagined your “championship” to play out. Because these boys are just not acting like champions if you ask me… If you look at you best active champion, Mr. Six-Time, I think you can see the difference.

When Jimmie had a parts failure and was eliminated; he was disappointed but proud of his team. He is a true champion of his sport. Kevin Harvick did not do what a champion should do when his engine failed at the end of the Talladega race. Instead, to ensure he moved on to the next championship round, he wrecked the field, eliminating Junior’s chance to beat Logano fairly and move on. And a black flag to the NASCAR officials who called off the first restart for a do-over because Jimmie and Kyle Larson landed in the grass- there was nobody in harm’s way- and we all know it. Couldn’t live with your one green white checker change- seriously sounds like WWF rules to me.

In the closing laps at Texas, Jimmie and Brad left it all on the track fighting for the win, but raced each other like champions. Jimmie won without spinning his opponent. In nearly the same situation, Joey, who is clearly not a champion, chose to wreck Matt Kenseth in order to eliminate competition- because he had already ensured his place in the next round he could have raced clean for the win and chose not to.  Shame on Brian France for supporting that move. Quintessential NASCAR my fanny.

Matt wrecking Joey out at Martinville was pure joy to watch (and rewatch). Because he had it coming!  NASCAR benching Matt was wrong after they did NOTHING to Kevin Harvick after he altered the end of the previous race. But how could they bench the defending series champion…

(NASCAR also killed Matt’s streak of 571 consecutive starts, which was the second-longest active streak behind the Gordon's 795 in a row. Jimmie Johnson and Ryan Newman have each started 502 consecutive races since the 2002 Daytona 500.)

Icing on the cake was Joey blowing out the back end of his car on lap nine yesterday when his tire exploded- I think the only person happier than me was Matt Kenseth. Points to him for the best post-race Tweet:

''Good work @JimmieJohnson! Textbook pass for the win at the end of the race when someone is trying to take your lane. #quintessential''

And with the Chase format that is supposed to emphasize wins, NASCAR, how are you feeling with the 3 biggest winners of 2015 not being in your final four? Jimmie, Joey and Matt have 16 wins between them. Are you trying to make the championship completely meaningless? Because it is working!

Daisy

Daisy was given to me today at the Cin City Reptile show- she needs to be fattened up but seems pretty well tempered. So that makes 4 for me...

The Constantine Weekend

 

 

 

The Next Chapter

I have worked almost my whole nursing career in grant-funded positions where the need was great- in the South Bronx with children, with the HIV+ population in Yonkers, and most recently with the EB community. I have worked with debra for nine years- it is difficult work, challenging, and bad days are tough. But I love the EB community and have done my best to serve them.

Sometimes it is just time to move on, and I found a new job in Children’s that I think suits me. On the 24^th of August, I accepted and then called my current Executive Director to let him know.

Leaving is hard. Always.

Next came the letter to the Board….

August 27, 2015

Dear Members of the Board,

I am writing to notify you that I have accepted a position at Children’s Hospital  in the Human Genetics Department. I will be working with families who have Neurofibromatosis.

Nine years ago, I was welcomed into the debra family and I cannot express how grateful I have been to have the support of our EB providers, patients, families and the amazing debra staff. I was taught, my questions were answered and information was generously shared. My work with debra has been life changing. Moving forward, I know I am a better nurse for the experiences I have had during my time as the debra Nurse Educator.

As I transition to my new role, I will do all I can to assist the next debra Nurse, just as Madeline Weiner assisted me when I started. My goal, always, is to insure the success of debra and debra’s support of our families.

It was hard to write, and the kind response of gratitude I received warmed my heart.

But the hardest part was yet to come. I had to say goodbye to the families I have worked with for nearly a decade.  I finally finished the final touches and posted this on Facebook:

Hi Everyone, Nurse Geri here. I have some big news to share with you all.

I am transitioning to a new role at Children’s Hospital, working in the Division of Human Genetics. In my new role, I will be working in an ambulatory care setting with families who have Neurofibromatosis, another difficult genetic disorder.

At the same time that I am excited by the new challenges this work will bring me, I am saddened by the fact that I will have a less active role in the EB community. You have all taught me so much. You have shared your stories, your successes and failures and taught me what EB really means in everyday life.  For your support, I will always be grateful. 

I will assist the new debra nurse in any way I can, just as Madeline helped me when I started back in 2006. And I am sure all of you will share all you can so this individual finds the same success I did. Your compassion, honesty, and kindness have helped ease the stress of working with this very complex disorder- we all know it is so much more than a skin disease.

Thank you everyone, for nine amazing years!

So much harder than I imagined. I am excited for my new adventure, but I will miss this work, this world… Change is hard, good-bye is hard. I am waiting for the next chapter to start.