Have you ever wanted to become a SUPER HERO ????????????????????


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   I remember from my childhood, when you heard the words, “SUPER HERO” you though of these characters.  Batman & Robin, WonderWomen, Superman and the rest of this bunch. I wanted to have super powers, who didn’t want to become a Super Hero.  I know that was only a dream.  How can Lynne Robitaille be a SUPER HERO?

Well, I made my dream come true.

I BECAME A SUPER HERO 

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“I AM A REGISTERED ORGAN DONOR”

ORGAN DONORS ARE HEROS

You to can become a SUPER HERO, register today.

http://www.donatelife.org

These are the latest statistics of people who are waiting for organs.

How many people are waiting for an organ transplant?

Currently, close to 124,000 men, women and children in the United States in need of a lifesaving transplant.
Largely due to the rarity of donation opportunities, only about 28,000 organs are transplanted each year.
As a result, 21 candidates die each day for lack of a donor.

I remember being in the hospital with my daughter, praying she would not fall into the last statistics.  Lauren was given a second chance of life from a SUPER HERO.  

Also I would like to mention, you can also be a living donor.

http://www.transplantliving.org/living-donation/being-a-living-donor/

Join me and become a SUPER HERO

Lynne  1437940979_love_valentines_day_11

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American Heart Association Halloween 5K walk


Traci Heath, from the American Heart Association ask me to help spread the word on a very important cause.  Please pass this on, show your support.  Sounds like a fun day for yourself and the family.

Traci Heath
Director at American Heart Association

Please help me get the word out about this Halloween 5k / walk.  You can form a team, walk/run as an individual or with friends and family and bring the kids! Family oriented event on Halloween morning. Please wear your costumes! Face painting, games, Knight Productions​ DJ Entertainment and much more! Sponsors: Baystate Health / Health New England, Subway, Greylock Federal Credit Union, and WBRK!! Enjoy a fall foliage ride to the Berkshires on Halloween for this fun-filled event! Oct 31st @ BCC. http://www.berkshireheartwalk.org

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Click on link below for more information

http://heartwalk.kintera.org/faf/home/default.asp?ievent=1131488

Lynne   1437940979_love_valentines_day_11

Information on Organ Donation


Are you an organ donor?

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This could be one of your most important decision in your life you could make.  I cannot think of a more beautiful tribute to your life, knowing if you could not be here in this world, you could help someone suffering, to live.

When I look at my daughter, there are times in my mind I try to picture the person who made the decision  to be an organ donor.  She saved Lauren’s life.  We still do not know who the person was yet, but feel confident someday we will.

I believe this is a subject that most people don’t want to think about.  Let’s face it, no one wants to think about their own death.  I know I don’t.  But, God forbid something was to happen to me.  It would be a privilege to know that I could help others after I am gone.  Take a moment to give this subject some though.  If you have any questions about becoming an organ donor, I have posts that explains everything you need to know.  Also you can go to  Donate life.

If you could take a moment to take this poll, Lauren I would appreciate it.

Thank you

 

Lynne 1437940979_love_valentines_day_11

Sunshine Blogger Award


I have been nominated for the                  SunshineBloggerAward

Sunshine Blogger Award

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I was nominated by Scribbles & Musing.  Thank you so very much

http://scribblesandmusings.com

. Thank you for the nomination.  My first though was omg, people do like my blog.  I am very passionate about what I write about.

The Sunshine Blogger Award is a way for bloggers to get to know each other and also get other bloggers to connect with each other.

The RULES of accepting the Sunshine Award are as follows:

Acknowledge and thank the nominating blogger with a link to their website.
Share 11 random facts about myself by answering the questions the nominating blogger has created for me.
List 11 bloggers I believe deserve some recognition and a little blogging love! (I can’t nominate the blogger who nominated me.)
Let the 11 bloggers know I nominated them.
Post 11 questions for the bloggers I nominate to answer.

Questions for my nominees:
Who is your favorite author(s)?   I love to read Danielle Steel, when we take our summer vacation to the beach.  My time!!!
What hobbies do you have?    I love to do crafts.  I had a business called Country Look Designs Gift Baskets. I loved to design personalized gifts.  After Lauren started to get sick, I had to give it up to take care of her.  I also enjoy gardening.
What is one thing that is always guaranteed to make you smile?   That’s an easy one, when my family is happy, I am happy.  My family means the world to me.
Are you an Android or Iphone person?   Android
Do you have a phobia? If so, what and why? (had to ask)  After living in the hospital so long with my daughter, I have a hard time being in a confined area.  There are times now even when I go out shopping, I find myself almost like in an anxiety attack.  Time to leave.  Also the one phobia I always have had, spiders.
How did you get into blogging?  When I started my first blog, Lauren was in the hospital.  I could not keep up with all the phone calls.  Then I thought I would start a blog, so  I could keep everyone informed on Lauren’s condition.  Now my blog is about Life after a Heart Transplant.  I have been able  to meet so many incredible  people from all over the world.
Introvert or extrovert?  To be honest, I believe I can be both.
Do you sing along with the radio even if other people are around?   Of course, when I hear a song on the radio that moves me, music is great therapy.
What is your favorite season and why?   Well, I live in New England, so we do have the 4 seasons.  I love them all.  But to pick my favorite, it would be spring.  Everything new and blooming,  There is nothing like after a long cold winter, to finally go outside.  My living space is now doubled.
What is a goal that you have for this year?  My personal goal for this year is to finish writing my book and to get it published.  The book is about our journey living in a hospital, being on the heart transplant list. Also it entails information that I wished I knew, when we were in this situation.  To be able to help others in coping, living and just to let them they are not alone.  Plus my son is getting married, time to plan a wedding.  To be able to give them the wedding the in vision.
What would you change about yourself, if you could?  That’s a hard one, but the only thought that keep’s coming to mind is to get healthier.  I have been pushing my daughter to take care of herself, that (like most people do) tend to forget about themselves.  Need to take time to take care of Lynne.

My nominees (in no particular order) are the following:

So to all my nominee’s here are your questions

  • Describe yourself in 4 words?
  • If you could visit any place in the world, where would you go?
  • Are you a registered organ donor?
  • What do you call your happy place?
  • What is your number 1 priority in your life today?
  • Are you a political person?
  • Dog or cat?
  • Favorite color?
  • Are you more comfortable dressing up or wearing comfy cloths?
  • Would you be able to be a public speaker?
  • Last one, give a quick description of yourself?

Looking forward to learning more about each of you!

Lynne  1437940979_love_valentines_day_11

Time to get in shape


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With summer coming to a close, my husband and I have decided it’s time to get healthier.

My husband came home from work the other day and said “either I lose weight or I need to buy bigger suits”.  I looked at him and started to laugh, and said you know what we need to do.

So together we are going to do this as a team.

I will post updates of the progress.

Lynne 1437940979_love_valentines_day_11

What is happening to our country….


Plan for cuts in disability benefits, but hope for the best

This morning I came across this article from USA TODAY POST, it really got me thinking.

The future for Medicare and Social Security might not look bright at the moment, but it’s particularly bleak for the government’s disability insurance program.

According to the Social Security trustees’ report released last month, the disability insurance trust fund will run out money in 2016 and it needs immediate attention. In the absence of any attention, millions of Americans will receive an automatic 19% reduction in their Social Security disability benefits in the fourth quarter of 2016.

Why the cuts? Social Security is precluded from spending money it doesn’t have, according to a recent report by the Center for Retirement Research at Boston College; benefits must be in accord with disability insurance payroll tax revenues.
USA TODAY
How to plug Social Security tax drain and keep more money

To be fair, most experts don’t expect lawmakers in Washington, D.C., to cut Social Security disability insurance benefits. “The reality of the situation is that Social Security disability insurance benefits play a vitally important role in the lives of just under 11 million people in this country today, nearly 9 million disabled workers, along with an additional 2 million family members, including 1.7 million children,” says Kurt Czarnowski, a principal with Czarnowski Consulting in Norfolk, Mass.

In the article it had a comment page so I started to read them… very interesting opinions on this subject.  The majority of the comments pertained to persons who apply for disability, who are not deemed a disabled person.  I believe that to be true.

Over the past, let’s say decade, I have heard of people applying for disability because of minor medical issues.  OK, maybe they cannot do the job they used to do, but in our day and age, there are so many jobs out there that a person can do, without it being a job that affects their medical issue.

In our society, I truly feel more and more people are just looking for the hand out.  I was told by a social worker that when people loss their jobs, being fired or laid off, they collect unemployment.  Then when it runs out, they turn to social security for money.  Have they looked for a new job, probably not.  Their live style changes and like not having to go to work.  This is what is called mailbox money.  So now they have medical issue’s they claim prevents them to work.

When we watch TV, how many commercial are on now, from lawyers saying “call me if you have been declined for social security”.  They are on the band wagon now also.  These lawyers follow the trend of how they can make a buck also.

This subject frustrates me, for reasons people just want to use the system out of pure laziness on their own behalf.  I know people who are on disability, because they really NEED it, of a truly disabled condition.  They want to work, they want to take care of themselves, they want to be independent, but it is not possible for them.

So now with so many false claims being submitted, first of all you should be ashamed of yourself.  When a person with a real disability applies, first of all social security has what they call the Blue Book they refer to.

Disability Evaluation Under Social Security has been specially prepared to provide physicians and other health professionals with an understanding of the disability programs administered by the Social Security Administration. It explains how each program works, and the kinds of information a health professional can furnish to help ensure sound and prompt determinations and decisions on disability claims.

Another quick thought, think about all the veteran’s out there, they fought for our country, our safety, that have been injured during their line of duty, now live with a disability and they have a hard time to help get assistance, think about that one.

I guess I can go on and on this topic, what are your thoughts?

Lynne 1437940979_love_valentines_day_11

Make today a beautiful day


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The sun is rising.

  I took this picture when I was at the beach, a beautiful morning sunrise.

I am so blessed, that I had the opportunity to be able to watch this magical site.  It’s a new day.

When you start your day today, be thankful for everything and everyone you have in your life, there are no guarantee’s we have tomorrow.  Say a prayer for those are suffering.  Every morning I start my day with a prayer  for anyone who many be living in the hospital, that their gift of life will come to them today.  This poem was written by Suzy Kassem.

 Each day is born with a sunrise
and ends in a sunset, the same way we
open our eyes to see the light,
and close them to hear the dark.
You have no control over
how your story begins or ends.
But by now, you should know that
all things have an ending.
Every spark returns to darkness.
Every sound returns to silence.
And every flower returns to sleep
with the earth.
The journey of the sun
and moon is predictable.
But yours,
is your ultimate
ART.”
― Suzy Kassem

Today is Saturday, the weekend.  To some people it’s called “finally the weekend is here”, to others it is just another day.  The only thing you have control of, is your approach to the day.

Lynne 1437940979_love_valentines_day_11

Hope for Cian, please take a moment to read


Awhile back I posted the story about Cian McDonnell-Lynch.  He is now in Boston.  Please view the news video.   My heart breaks for him and his family.  Like his mother said “where there’s life, there is hope”.

With everything that is going on in the world, let’s not forget to help people who truly need our support.  Please pass this on, every little donation or prayer will help.

Cian is just four years old.
He’s been given until Christmas to live.
His family, saying they refuse to give up, has traveled to Boston Children’s Hospital in the hopes that one of the world’s premiere hospitals can help keep him alive.
Cian has been fighting an often deadly bone marrow disorder called Dyskeratosis Congenita since birth.
“It’s a very rare disease,” his mother, Lisa McDonnell, told WBZ-TV Tuesday.
“It affects one in a million. And Cian is actually at the more severe end of the syndrome.”
Cian McDonnell-Lynch and his family in Boston (WBZ-TV)
The disease left Cian permanently blind at the age of one. He did get a successful bone marrow transplant two years ago, but the disease is now affecting his lungs with another rare and deadly disorder, microscopic pulmonary AVMS.
“They’re actually microscopic blood vessels; they’re malformations,” his mother explained. “And the oxygenated blood is not getting around to his whole body.”
“We were told today that it’s actually progressing very quick, so we’re just really really hoping that he’ll be accepted onto the transplant list here in Boston.”
Cian has been given only a few months to live.
A double-lung transplant would likely save his life, but he was rejected for one at a hospital in London.
“He was the first child that they’ve seen with this condition,” Lisa said. “It’s just so rare. I think they’re just afraid of what the outcome is going to be. His quality of life afterwards. But we just can’t give up on him.”

So Lisa and Cian’s father and big sister have come to Boston Children’s Hospital as their last hope. The hospital has begun running tests on Cian to determine if his body can handle the transplant.
But if it can, the family’s Irish insurance policy will not pay for the surgery here in the sates.
Between the procedure and recovery time, the family will need more than $1 million out-of-pocket to keep their son alive.
That heart-wrenching story has touched off a massive fundraising effort in Ireland that has spread here to the U.S. and as far west as Australia. Well more than 5,000 people around the world have donated close to $200,000 already.
But there’s a long way to go.
“It’s just so heartwarming to think that everybody cares so much about him,” Lisa said. “Everybody is really fighting in our corner, in his corner, and he’s going to get the best possible chance.”
“Where there’s life, there’s hope.”
If you want to donate, please click here: http://www.gofundme.com/hopeforcian.
You can also learn more about Cian’s story at http://www.hopeforcian.com, and on his Facebook page, “Hope for Cian.”

Lynne    1437940979_love_valentines_day_11

The Importance of a Transplant Social Worker


In this article, I want to focus on the importance of your social worker if you are living in a hospital with a life threatening medical condition.

When Lauren was admitted into the hospital, I felt like my world was turned upside down. I was so scared for my daughter.  Looked around the room, so many monitors, machines so clinical and thinking this is my home now.   I know my daughter was scared so I had to keep an upbeat persona to help her feel more at ease.  Nurses were coming in and out, monitors were beeping, IV’s were being administered, so much, too much was happening.

At Brigham & Women’s all the cardiac patients have private rooms, that was a blessing.  There was a couch in the room, so as I sat there with my husband just holding hands, my mind was going in a thousand directions.  I knew he would have to go home in a couple of days to go to work, I had to dig deep to find the strength to figure out how the hell am I going to be able to live in a hospital room with my daughter, in a city I didn’t know, being 87 miles away from home.  We had no idea how long we were going to be there.  Days, weeks, months or a year.  One thing I did know was, I was not leaving my daughter.  We were in this together.  From the outside people saw a different person, on the inside I was crying from fear.

We were meeting so many people, I would take their cards and on the back I would write little notes on them, like hair color, just something so that I could remember who they are.  I didn’t want to be rude when they entered the room, if I couldn’t read their name badges.

There was one person we met that knew I wouldn’t forget her name, it was  Kristen DeVoe, our social worker from the hospital.  Kristen came into the room, introduced herself to us, then told us she was here to help us in anything we needed.  She was not only there for Lauren, but she was there for me also.

Everyday, Kristen would come to our room to check on us, giving us emotional support, asking if we needed anything and I mean anything.  Kristen became a very important confidant in my life.  I found I could talk with her about anything.  She also was a blessing when it came to taking care of medical paperwork, insurance forms basically anything.  More important, when I just needed a hug or talk outside of Lauren’s room, Kristen was their for me.  When Lauren wanted to talk, I would leave the room so she could have her one on one time also.

I wrote to Kristen and asked her if I could write a post about her and her job as a social worker.  Even though we have been out of the hospital for a while now, I can still contact Kristen if I need to.  Kristen’s answered “absolutely”.  A social worker will not be your best friend, but during that time in the hospital, in my mind she was.

I would like to introduce you to,

Kristen DeVoe MSW, LICSW
Clinical Social Worker
Cardiac Transplant and Mechanical Circulatory Support
Brigham and Women’s Hospital

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 Some facts about my role…I’ll include my basic job description first:

· Work as part of a multidisciplinary team of physicians, nurses, dieticians and pharmacists.
· Provide comprehensive social work assessments as part of a pre-transplant or pre-ventricular assist device evaluation.
· Provide ongoing psychosocial and emotional support to patients and families before and after transplant and mechanical circulatory support.
· Facilitate a monthly support group for patients with mechanical circulatory support.
· Offer clinical opinions regarding the candidacy of potential transplant recipients at weekly selection committee meetings.

Boring, I know. So a lot of what I do is help patients and families get through the difficult process of waiting for a transplant. I provide support and counseling for patients before listing, while they are waiting and then after transplant. When I first meet a potential transplant patient I have to get to know them and make sure they have enough social support to get through the process successfully. I help patients manage anxiety and depression and basically serve as a source of support for them emotionally. I love my job. The relationships that I form with patients and families (like you and Lauren) are very important to me and I feel grateful that people allow me to share part of their journey. It truly is a privilege to work with the patients that I get to see and I’m constantly amazed by how much the human spirit can endure without breaking.

Kristen

Kristen DeVoe MSW, LICSW
Clinical Social Worker
Cardiac Transplant and Mechanical Circulatory Support
Brigham and Women’s Hospital

If you are living in a hospital, please take the support of your social worker.  Dr.’s and nurses are very important components in your care, but also remember your social worker is as important also.

This post is dedicated to Kristen DeVoe and all the other social workers out there.

Lynne