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Lyme Disease Support Network

Ben's Friends Monthly Newsletter - November 2014 Issue


#1

Just the Stats:
Communities: 38
Friends: 44,000+

Gratitude. Thank you. Gratzie. Danke. Tak. Gracias.



So many ways to say it and to feel it.

It's not only good to hear on the receiving end, but it's good for us to say on the sending end, too.

In fact, some researches written in the article What is Gratitude show that "expressing gratitude makes everyone happier: the sender, the recipient, and the people who are around them."

Also, "Even in the face of tremendous loss or tragedy, it's possible to feel gratitude. In fact, adversity can boost gratitude, recent findings show from this feature article by WebMD."

Even more, Robert Emmons, the world's leading scientific expert on gratitude who schooled at the University of California-Davis, reveals in a New York Times article, that gratitude is good for our bodies, our minds, and our relationships. He and his partner instructed to keep a journal listing five things for which people felt grateful.

Many have proved that gratitude and being thankful will do many good things.

For example, according to Robert Emmons and his colleagues, when you increase your gratitude (i.e. reflecting every morning on 5 things for which you're thankful for two months) will positively affect your optimism and happiness.

Also, whatever you focus on, i.e. gratitude, will increase, and you will attract this focus magnetically.

Another example, when your focus goes to that for which you are grateful, less focus is available to go toward that which disturbs you.

With this last example, then, is it possible to be thankful for everything, even the obstacles and the things that bring us to our knees in pain and struggle?

Probably.

One thing that gets us toward health is that of Ben's Friends with its many benefits of:
-Journaling and blogging our experience
-Venting;
-Connecting;
-and many more.

This edition of the newsletter is focused on gratitude and our thankfulness.


In this issue

The following are tips to help decrease anxiety, depression, or stress. Of course, just because something works for one person, it may or may not work for you. Also, please check with a medical professional prior to using any of these ideas.


Spotlight: Grateful for Ben's Friends

We are grateful for many things.

Many times, unfortunately, we stifle our gratefulness until the holidays like Thanksgiving roll around.

With this holiday quickly approaching in the United States, it is a good reminder to be thankful for the many things for which we wish to express our gratitude.

There is one obvious thing for which we are grateful; that is, simply, the reason why we are even reading this. That is, because of the community(ies) to which we are affiliated through Ben's Friends.

We can all say that we are thankful for having a community filled with others in the same situation. We have this community because of Co-founders Ben Munoz and Scott Orn.

What's the Story Behind Ben's Friends?


According to the Ben's Friends About page..."In 2006, Ben Munoz suffered a life-threatening brain hemorrhage. He created an online support community so that he could connect with other patients.

The support he received, and later gave within that community, led to the founding of Ben’s Friends, a network of patient communities dedicated to providing support for patients of rare diseases like himself...

There are some amazing non-profit organizations all around the world doing fantastic work to raise awareness, raise money, and provide medical information to patients, friends, and family.

'We decided to complement their work, rather then duplicate. Therefore, we chose to concentrate all of our efforts on learning how to create and run compassionate, responsive patient communities.'

Watch the video of how Ben's Friends started from this link.

Turkey Talk

Why Rare Diseases?

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000 citizens and in the USA when it affects fewer than 200,000 people. Rare diseases may affect more than 60 million people worldwide.

Thank you for starting and helping to facilitate these communities!

How Can I Help?

Thanks for your interest in making a difference. On behalf of anyone living with a rare disease, we thank you.

Ben's Friends is a 501(c)(3) non-profit, and your donation gift this month is tax-deductible.

1. Help a Friend or Relative: if you know someone with a rare disease, forward them our web site or ask them to contact us at ■■■■■■■■■■■■■■■■■■■■

2. Connect Us: if you have a connection you think would be interested in helping us or partner with us (PR consultants, reporters, medical professionals, hospitals) please let us know at ■■■■■■■■■■■■■■■■■■■■.

3. Help Spread the Word: help us spread the word about BensFriends.org or a specific patient community. Follow us on Twitter at (@bensfriends). If you have marketing or PR expertise, we would love to hear your ideas about ways to spread the word and help more people. Contact us at ■■■■■■■■■■■■■■■■■■■■.

4. Start a Patient Community: if you have a rare disease and aren’t happy with the support available to you, help us fix that with a new patient community. Contact us at■■■■■■■■■■■■■■■■■■■■.

5. Help Us with PR: our biggest need is to get this story in front of reporters and bloggers. If you have a blog, blog about us. If you know a blogger, send them a link to our web site.

6. Help Us Increase Our Google Rank: most people find us via Google. If you operate a web site, linking to BensFriends.org helps make our patient communities easier to find for the patients who need us.

7. Ben’s Friends is run by an army of volunteers and relies on donations to fund operations. No one on the team takes a salary, so 100% of donations go directly towards web site related costs. Please click here to make a contribution.

8. If you shop on Amazon, please sign up for their new Smile program that gives money back to Non Profits (at no cost to you). Go to Smile.Amazon.com, choose “Bens Friends” (Houston) as your charity of choice, then whenever you shop on Amazon make sure to go toSmile.Amazon.com and help thousands of rare disease patients at BensFriends.org.www.youtube.com
Spotlight Discussion: Key Talking Points with Friends and Family

For many Ben's Friends members, holiday festivities will bring a joyous chaos. For many, it also means navigating additional obstacles.

Last month's newsletter gave an abundance of tips for stress relief. One tip had to do with keeping open communication.

The following excerpt from July 2011 "Brainline" gives some of us a cheat-sheet to follow when communicating and helping others to understand our situation and/or needs.


After all, it's our responsibility to teach people how to treat us, and this article is a great starting point.

Thank you, Louisa, for sharing this!

For the complete article and key points for brain injury
survivors, visit Lost & Found: What Brain Injury Survivors Want You to Know.

"Hear what people with TBI are really thinking and want their friends, family, and others to know" - by Barbara J. Webster, Lash & Associates

"I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a 'brain fatigue.It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think."

My stamina fluctuates, even though I may look good or 'all better' on the outside.

Some days are better than others.

Pushing too hard usually leads to setbacks, sometimes to illness.

Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations.

Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to.

Limiting my exposure is a coping strategy, not a behavioral
problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises.

“Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain,
overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work
deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt.

Please don’t be condescending or talk to me like I am a child.

I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain.

Don’t confuse Hope for Denial.

We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day."

Did You Hear?

"Ben created this wonderful site and his twitter feed is filled with stories of hope over great challenges...Ben’s Friends continues to expand this gift of love and support to more and more communities of folks sharing great health challenges.

On Thanksgiving, if we have a pulse and a smile, life is great. Ben’s growing support sites bring shared support and will continue to add new members to share the challenges and share the joys. Thanks to Ben, Shalon and all the others who manage this site and the bensfriends.org sites. The gift that keeps on giving…"

-Sharyn


Coming Soon
November:Adoption Awareness Month

December 3:International Day of Persons with Disabilities

December 10:Human Rights Awareness Month


Network Stats:
Members: 44,376
Unique Visitors: 125,767
Twitter Followers : 4,395
Facebook Followers : 50, 091
"Expressing thanks may be one of the simplest ways to feel better."

For What Are You Most Grateful?

Thank you for everything and Thank You For Your
Generosity and Support



"Ben's Friends means a lot to me because initially it was all about helping Ben. Through our friendship, I saw how patients with rare conditions have a really hard time finding others to talk with. We decided to do something about it and the rest is history.
I'm most grateful for my new engagement with my fiancee Vanessa. She has brought a lot of love and fun to my life. We're getting married in 2015."
-Co-founder and Board Member Scott Orn




I am eternally grateful for my surgeon repairing my heart in 2010, for Ben and Scott's vision to create Ben's Friends in 2007, for all of the amazing members I connect and meet day in and day out, for our 200 plus volunteer moderators, for Madere leading the moderator support team, for Eric getting me involved in 2010 and for my second family, Ben's Friends. Thank you all for making Ben's Friends what it is today.

- Executive Director John



Board Member Eric D. Kroll, an entrepreneur, investor, and consultant/advisor to high growth companies, joined BensFriends.org in 2009 to help build the infrastructure to reach its potential.


"I am grateful for the moderators for really running the show."

- Board Member Eric

- Thank You Video from Member Seenie



I am thankful I've finally reached a point where I truly trust God with my health, and I'm not anxious about rushing to end this journey. After Thanksgiving, I will go on medical leave for my 35th procedure. I am more confident than ever God will heal me inside and out, and I'm grateful that I will have love filled, uninterrupted time with my family (despite the circumstances).

- Member Jaz

- Thank You Video from Member Elodie



"I'm most thankful for being able to read this and for all of the things that I can still do."

-Member/Newsletter Contributor Julie


Chris
- Thank You Video from Member Chris



Is grateful for being positive, especially during the death of her husband.
"I am thankful for my support system"

-Moderator Darcy


"I had a brain bleed in 1959 when I was 8 years old. Not knowin
g that it would have an impact on the rest of my life with so many changes, I am relieved for the many people who "get it", especially those who understand and appreciate my intelligence, my drive, and my determination to become a paralegal. I'm a thankful to be alive."

-Moderator Irene



- Thank You Video from Member Nikki


"The top item on my gratitude list is being born a free citizen. I'm also grateful for the people in my life who "make life beautiful", including friends from Ben's Friends."

-Moderator Jennifer



I am thankful for the opportunity to connect with so many people in ameaningful way and on so many levels.

-Moderator Red



"I'm thankful for my supportive family who has seen me through so much, and for my lovely fiancee who I will be marrying in June!"

-Moderator Michaela

"I'm grateful for homes recovery after Superstorm Sandy devastated it & my community, I feel stronger."

-Moderator John "JC" Colyer



"After family and home, I am grateful that I traveled overland half round the world as a young woman, learnt so much about people and places and have the pictures to remind me should my memory fail completely."
-Moderator Nel





"I am a trained artist

I am thankful my pain is managed."

-Moderator Jackie




I am thankful for my second chance at life. That's something I NEVER take for granted.
-Moderator Allen




- Thank You Video from Member Lisanne
"I am thankful for family and this site/community. I worked for many years and had no clue what I would do after I stopped working. I found Ben's Friends, and it has been wonderful; I feel I am still helping people and myself." -Moderator Luci

I'm thankful for a second chance at life with my beautiful five year old daughter and my lovely bride of seventeen years.
-Moderator Tim



Regards,
Ben’s Friends Team