Posts Tagged ‘LymeBites’

Lymenaide – And Then There Were None

// April 16th, 2012 // 5 Comments » // Ashley's Blog, Eric's Blog, LymeBites Blog

I’m writing this post just to clear up a lot of questions and concerns and other issues. As is obvious I’ve been too sick for a long time to do anything. In that same time period the organiation Lymenaide which I worked with and was a part of helping to do make Paint May Lyme Green a reality, has become extinct. There is a better word for it…maybe retired?

Lymenaide Final Post is where you can go to read what Ashley has said about her time working with the Lyme community and her plans to move on. It was on honor to work with a great team of people who were very creative, passionate and committed. I hope Ashley finds all she’s looking for and has a wonderful, healthy life ahead of her.

I however am NOT better. I wish I was!!! But I am not. But I’m getting to the point where I can start to be active again. I’ve been under attack with so many emails and questions about Lymenaide going away and what that means for LymeBites and my involvement in the Lyme community. It means nothing.

Lymenaide was a wonderful organization that served it’s purpose and did a lot of good, and interested enough people to “take over” where Lymenaide began. The PSA’s were a major accomplishment, with help from many in getting the celebrities to do the PSA’s to Ashley’s work with her brother in actually filming them. Then the hundreds of volunteers who helped get them to the many TV stations. It was a success. And it was meant for it was meant for, served that purpose, and now that that has happened it is “retired”.

So best of luck to Ashley, as well as Nani and Candice in their endeavors. But I want to let people know that Lymenaide ending does not mean that all 4 of us in the organization are all ending what we have. LymeBites and Lymenaide often crossed over, but the purpose of LymeBites was always different than the purpose of Lymenaide. So the changes do not effect my involvement in Lyme disease awareness, my responsibility to it because I have a voice that can help others, or my commitment to make a difference.

So nothing bad happened. If you read Ashley’s post you’ll see she is very happy and finding her new life. That is wonderful and I hope she finds every happiness in the world. But in the meantime, I am not going anywhere, LymeBites is not going anywhere, and we are about to unveil a new and improved website as well as some great projects that are being worked on as we speak. (Well as soon as I finish this post.)

But with the way people speculate I was hearing horror stories of fights and problems…as if Lymenaide was like Fleetwood Mac without all the cocaine. Nothing like that at all. Just that we served our time and purpose together and that was meant to be, and now we all move forward with what is in store for us next.

I just wanted to put a little post out there to let people know that so they don’t think there was any form of negativity involved in any of the changes, and to let you know while I’ve been silent for a long time, I’ve been fighting like hell for my life and my sanity, so that I could get back to doing what I do best. Run around in circles and hope once in a while I do something right.

Health, happiness and peace to everyone.
Eric

Time Keeps Ticking – Tick Tock Tick Tock

// April 13th, 2012 // 2 Comments » // Eric's Blog, LymeBites Blog

I don’t know why but that title reminds me of being a child and the fear I’d have when Peter Pan was on TV once a year and I’d hear the tick tock of the watch eaten by the crocodile. (I have to admit, my brain is much worse than it used to be, my dyslexia is at an all time bad, and I’m not sure I have all the facts of Peter Pan right, but I don’t have the time to watch it now, so bare with me as I muddle my way through an attempt at an update.

It’s been over 4 months since my last post. In fact I think my last post was when I hit my 2 1/2 year “sick” mark. (Sick for many, many years before that, but the day I woke up completely disabled and never recovered is my “sick day”.) The 3 year “sickerversary” is coming up, the day after my 39th birthday. Hard to believe when I was 35 I was so sick and told my friend my body just wasn’t right, something was wrong. And now I’m getting ready to turn 39 and am still sick, living in a bed in my mother’s family room, fighting every day to have the physical and mental strength just to get out of bed and do what I have to do just to maintain being sick. Not even considering what needs to be done to heal, to find happiness in a life filled with pain and misery, to find a “home” in someone else’s home, and accept this as my life and my future.

I’ve more or less wiped out a good portion of my friends and family financially. The out of pocket costs so far are in the 6 digits, and I don’t know that I can even safely say I’m “halfway there”. Truth is I don’t think there is ever an ending point, so you can never truly have a halfway point.

That’s what sucks about being sick with Lyme. And I mean really sick. Not the lucky people who see a tick, get it taken care of and properly treated immediately and then are fine. I mean the other majority of us that went for years and years without diagnosis, only to end up so physically disabled by the disease that by the time we found out about it, it was too late.

It sucks. We know that. But what are you going to do with “it sucks”? I stopped going on the FB “news feed” because I was so sick of seeing so many depressing posts. I made a goal to keep my FB page nothing but positive and honest (sometimes honesty isn’t positive, so then I infuse it with humor to take away the bite). But so many people who just don’t accept that life has handed them. (If you’re expecting some kind of “if life hands you Lyme make margaritas” saying here you will be disappointed. Actually, I guess you won’t because I ended up using one anyway.)

I reached a point where I realized this disease took away my life. The life I had. It didn’t take away my ability to live. So yes, I have been “gone” a lot over the last year or longer, and there are many reasons for that. I hope to share some of them with you, as well as my journey to get me back to the point to be able to sit and write again.

Am I going to write I’m filled with hope and happiness and gratitude for an illness that has taken away the life I loved and left me with a life I have to learn to accept, let alone try and like? No. Because I’m not. I’m mad as hell about that, even 3 years later. And maybe will be for the rest of my life. But that anger is fuel, and I need to use it to fuel the right fires. And over the last 2 years, which have been pure hell for me (I never expected how far down bottom could be until I hit rock bottom….and then hit it again….and then once again….and you guessed it, once again), I’ve had to learn to direct the fuel of my anger into the proper channels. And slowly I’m finding a way to accept what life has handed me, be thankful for it, and turn it into something beautiful.

So what are you going to do with “it sucks” in your situation? What can you do to make “it sucks” be okay? Please share you ideas in the comments section to share with others your ideas. And over the next few months, along with some amazing projects and articles that are being worked on, as well as a general overhaul of the website, I will share with you some of my secrets. (Nothing that will keep me from being elected to office in the future, but I think you all have enough on me already to keep that from happening.)

Life is a gift. But that is it. It’s like an empty box. The contents of our life are not just handed to us, we have to create them with what we are given. So help others know how you “create” out of “it sucks”.

What A Doctor Should Be – ©Karen Angotti

// June 10th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog, Lymenaide Awareness Campaign

(The following article is copyrighted and being used in it’s entirety with permission from the author). 

Helen Raser’s friend, Karen Angotti, is the mother of a beautiful young woman, Lisa Marie, who has been sick with lyme and co’s for about 20 years. Here is one of Karen’s many beautifully poignant pieces based on her long and difficult journey in the world of Lyme Disease. You may repost this article in its entirety only, please do not excerpt it, per Karen’s request.

WHAT A DOCTOR SHOULD BE
©Karen Angotti

A doctor should be a hero, a knight in shining armor, the sheriff in the white hat. A brave, courageous defender against wanton diseases and virulent pestilences that kill, maim, and destroy. He should be someone who doggedly pursues the enemy without a thought of retreat. Relentless and determined, he fights until the last breath is gasped and the last, faint heart beat is pumped through the struggling body of someone he may not even know. For this is his mission, to fight death and pain, to endeavor to soothe, heal, and relieve. It is a thankless task for death and suffering are as much a certainty as anything in this world. For as soon as one hideous disease demon is squashed with his seemingly pitiful weaponry, another more dreadful and fierce replaces it; and the battle begins anew.

A doctor should be someone who cares more for people than for money or prestige. A doctor who does not care is like an airborne blind pilot who cannot see the runway or read his instruments. All the knowledge in the world will not land that plane without the eyes to see. And likewise all the knowledge in the world will not cure a patient that a doctor blinded by indifference and apathy cannot see is truly ill. For a real doctor will listen to his patients with a heart of concern. He will listen to all his patients not just those who are comely of form, polished, refined, and educated. And adding that working knowledge of the patient to his book knowledge and experience, he will attempt to piece together a treatment that will work. No computer can compete with this ability. For though computers can spit out a diagnosis based on symptoms and then prescribe a standard treatment, no computer has a heart that can see and hear the patient with his own peculiarities and idiosyncracies like a real doctor can. Compassion is at the heart of that indefinable “art of medicine.” Without it, a doctor might as well be replaced by a timesaving, efficient state-of-the-art computer whose memory has less capacity for error than a frail, fallible human mind.

A doctor should be humble realizing that his craft is far from perfected. Medicine is a science that is constantly changing and growing; and the modern “discoveries” of today may soon become the obsolete “discarded failures” of tomorrow. Only a doctor who is humble enough to recognize the gaps in knowledge that exist can begin to have the kind of open mind that considers intriguing, new ideas and possibilities which may become the discoveries of tomorrow. For if one thinks he knows all there is to know, he no longer looks for answers and the three little words, “I don’t know” cannot pass through the sweilling lump of pride in his throat. Pride can construct an impassable roadblock on the path to the future.

A doctor should be someone who enters not a profession but a ministry–someone who is there to serve not to be served. People (even doctors) are not at their best when they are sick and scared. Who would not be irritated by listening to endless complaints all day long year after year? Only someone who realizes that the reason for choosing this calling was to alleviate as many of those complaints as possible. And given the impossibility of curing all of these ailments, the reward must not come totally from the lessening of complaints or the adulation of patients but from the knowledge of a service well rendered. The greatest satisfaction must come from knowing that you have done your best sometimes against seemingly impossible odds. Unraveling an intricate, diagnostic puzzle, using an innovative technique, or maybe simply holding someone’s hand and saying, “I am sorry.” These are the things that make being a doctor worthwhile. These are the intangible things that make the endless complaints, petty annoyances, and invasions of time bearable.

A doctor should be someone who is honest and trustworthy. Qualities that we often ascribe as more necessary for bankers and accountants. But which has more intrinsic value–mere money or an irreplaceable life? Trust is necessary between doctor and patient or a crucial element that may mean the difference between life and death is missing. If a doctor is saying one thing to a patient and writing another in the chart or gossiping about him with other doctors and nurses, then a sacred, unspoken trust has been broken; and the breach may impinge the entire relationship.

A doctor should be someone who is courageous and undaunted by the challenges which he most surely will face. There will always be some in every profession who are dishonest and even evil, those who will use their power for gain no matter how many or who it harms. “All it takes for evil to prevail is for good men to do nothing.” In medicine, perhaps more than any other field, it is imperative that the good men restrain the unsavory. For if they do not, who else will have the necessary knowledge or expertise to do so?

A doctor should be someone who is kind and discreet for ill-spoken words can scar
and maim as surely as a knife. And because these hidden scars are indetectable by any test or examination, they almost always cause a pemanent affliction–most notably a communication rift between doctor and patient that cannot be bridged.

A doctor should be someone who loves what he is doing so much that he would do it even if he were not paid or otherwise compensated. For in this ongoing battle between life and death, God’s most precious creation, Man, must inevitably confront his soul.

To my doctor, Edwin J. Masters, M.D., who showed me that a doctor could be what he should be.
Karen Angotti

Grass Root Support Surprises the ‘Twit’ Right Out Of Us, Thank You For Such A Wonderful Surprise!

// June 10th, 2010 // 2 Comments » // Lyme PSA, LymeBites Blog, Lymenaide Awareness Campaign

twit pic To begin, let me tell you a bit about Twitter.  According to Wikipedia – Twitter, “is a social networking and microblogging service that enables its users to send and read messages known as tweets. Tweets are text-based posts of up to 140 characters displayed on the author’s profile page and delivered to the author’s subscribers who are known as followers.”

Okay, what does that have to do with anything?  Ashley and I have spoken at great length in our awareness campaigns as to the importance of social networking and media sites in getting our message out.  Look at May.  The simple idea of a campaign for Lyme awareness literally blew up across the country and hundreds then thousands of people joined in.  Do you know how many people became aware in May?  Do you know how many lives were saved because of that awareness?  A great deal of credit has to go to Facebook, Twitter and the other social media outlets for their help in helping us spread our message.

Yesterday we received quite a surprise from Chloe, or in Twitter terms @TVD_Chloe, as she agreed to donate $.05 for each new follower following her on Twitter.  Wow…we were quite taken aback, but not surprised because of the amazing support the fans of The Vampire Diaries have given us since the stars of the show helped out with the PSA’s.

Then suddenly today I saw the following tweet (that’s what they’re called for you non-Twitterers):  @luckytobesilver is donating $.10 to the campaign for every new Twitter follower she gets.

Ashley and I set about to telling people, as we were getting messages on Facebook as people were adding these people on Twitter (and raising money for our awareness campaign at the same time), we suddenly saw another Tweet pop up!  @Christi_Roberts joined forces and is offering $.05 for every new follower.

Ashley and I can’t help but be astounded at this additional boost of support.  It is a huge help to the campaign, and to what we are trying to accomplish.

But then suddenly, I couldn’t leave my computer to go to the bathroom without more people joining onto the cause!!!  People were joining in so quickly (and Twitter kept crashing today, AKA the epis whale fail, also in Twitter lingo) Ashley and I couldn’t even keep up with sharing the information with each other, let alone to keep retweeting it and sharing on Facebook.  It was wonderfl!  But to make this easier, I am simply going to list out all of the following people who are participating in this fundraising project for the Lymenaide and LymeBites awareness projects we are planning.  As this expanded it now includes Twitter and Facebook and regular websites.

Less than half of these people have Lyme.  The others became friends to the Lymenaide/LymeBites awareness cause through the Public Service Announcements that we did as part of Paint May Lyme Green.  Through their new understanding of this terrible disease, they have been prompted to action.

Twitter
@TVD_Chloe is donating $0.05 for every new follower on Twitter from 06/08-06/15
@Christi_Roberts is donating $.05 for every new follower on Twitter from 06/09-06/15
@luckytobesilver is donating $.10 for every new follower on Twitter from 06/08-06/28
@icarusalsoflew is donating $.50 for every new follower on Twitter from 06/09-08/04
@Shannahg22i s donating $.05 for every new follower on Twitter from 06/09-06/20
@CAccolaWeb donated $20.00 today, which was for her donated $.40 for the first 45 people to follow her on Twitter
@lailakhangi is donating .20 euro for every new follower on Twitter from 06/09-06/30 (she is also donating .20 euro to Gulfaide)
@thelymegarden will donate $.06 for every new Twitter follower fro 06/09 until they receive 60 followers (the donation will be split between Lymenaide and CanLyme)

Blogs
Alyssa’s Blog – http://simplyalyssadreaming.blogspot.com -  for every person that subscribes to her blog from 06/09-06/16 she will donate $.05  June 9 and June 16 she will donate .05 cents to the Lymenaide campaign!!

Facebook
The Lyme Garden – Facebook Page will donate $.06 for every new follower of their Facebook page for the first 120 fans (The donation will be split between Lymenaide and CanLyme)
Craig Bancoff – Facebook Page will donate $.50  between 06/10 and 06/17 for every new follower of his Facebook page or new member of his website, you can Register Here for Craig Bancoff\’s Website.  Now in addition, for those who do not know ,Craig “is a musician suffering from chronic, neurologic, late stage Lyme disease and would like to show our support by helping raise money for Lymenaide.”  So beyond the amount he will donate for new followers, but for the same dates if you purchase the digital download of his CD he will donate $5.00 to the campaign!  If you purchase the CD from iTunes or CDBaby he will donate $3.00 for each purchase of the CD.  To get the digital download go here: Craig Bancoff – Merchandise.

And as a show of good sport, I will donate $.10 to the Lymenaide/LymeBites campaign  for the first 200 people to register with the LymeBites website.  Click Here To Register With The LymeBites Website

This is where you come in.  Are you on Twitter yet?  If not, please join and create at Twitter account at www.twitter.com.  Then go into search and enter all of the names above on Twitter and follow them.  Just by doing that you will have raise a lot of needed money for our campaign.  I actually figured out that if you did each of the things listed above you would raise about $7.00 for Lymenaide and LymeBites awareness campaign.  If we get just 500 of our collective followers and readers to actually do all of that, we could raise $3,500 for the awareness campaign without even having so spend a cent!  What could be better than raising money for a worthy cause without spending money?  It just takes a few minutes of your time, and we really need the additional funding to be able to complete our upcoming projects.

If you are already on Twitter then please add the people listed above also.

If you are on Facebook, please go and add the Facebook people for them to donate to the campaign.  And I highly suggest everyone register with Craig Bancoff’s website to also help us out, and while you’re there check out his music…purchase the CD and we will raise even more funds!  In addition please fan our Lymenaide Facebook Page, our LymeBites Facebook Page, our Victorious Vixen website run by our partner in Lyme Nani, and Candice’s Infectiously Optimistic Blog.  All 4 of us can be followed on Twitter and Facebook also.

And to all of these fans of the campaign, as well as those with Lyme who have gotten involved, we thank you so much for your support of this cause, your help in raising awareness and understanding, as well your assistance in raising the much needed funds to continue with our awareness campaigns and save lives.

If you’d like to make a contribution directly to our campaign through a different form of payment, there is a ‘Chip-In’ section in the top right of the LymeBites homepage, you can make a secure donation via PayPal or credit card there.  For other ways to make contributions via checks*, etc., or about sponsoring our awareness projects as well as questions about our campaign please contact Ashley at ashvantol@lymenaide.com or myself at LymeBitesDotCom@yahoo.com for more information.

Together we can continue to build the strength and momentum of our awareness campaign as we prevent another generation of illness.  We can’t let that happen, please help us prevent it!!

P.S. Please check out the montage of all the PSA’s we did that was put together by Chloe to the right of the post.

*Donations made by check to Lymenaide are not subject to any service fees. All other donation avenues; PayPal, Chip-In, Causes have services fees of between 3% – 12%. That money is taken away from your donation and goes to the payment service, and credit card fees. Checks can be made out to Lymenaide and mailed to: Lymenaide – PO BOX 290 -  Tahoe City, CA 96145. Direct payments to Lymenaide are not tax-deductible. The only way to make a tax-deductible donation is through the Lymenaide Awareness Causes Page on facebook sponsored by PANDORA.

Building Awareness

// June 4th, 2010 // No Comments » // LymeBites Blog, Lymenaide Awareness Campaign, www.lymenaide.com

We need your help.

We are working on growing the Lymenaide and Lymebites sites so that we can get corporate sponsors, donations and advertisers for the Lyme disease awareness projects we have planned.

We want to be able to get funds from others places so that we don’t have to solely rely on the Lyme Community who have done so much already.

We can’t do this without growing the blogs, facebook pages, twitter accounts and YouTube channel. We have to prove that we are big, important and have a large following in order to be attractive to “corporate” money.

We need your help to make this happen. Please help us grow these sites by encouraging everyone to join and subscribe. This is the biggest thing we can all do right now to make future awareness projects happen AND, best of all, it is free.

If we can’t get the support from the Lyme community, we will never get it from outside the community. Without that support future awareness projects like the PSA campaign can’t happen.

I really want to continue with these efforts but I can’t do it alone. I need your help to reach new people.

I currently have potential projects in the works with both Turn the Corner and PANDORA. They won’t happen if we can’t fund them. Interviews with Celebs who have Lyme, and a short film just to name a few. These are powerful ways to spread awareness but they aren’t cheap or easy to produce.

Please help us grow. This means continually seeking out new people to join our cause. Posting once on your facebook profile or wall isn’t going to be enough. This is a continual part of what needs to be a major part of our awareness efforts.

Facebook-
http://www.facebook.com/pages/Lymenaide/137229171760?ref=ts
http://www.facebook.com/pages/LymeBites-Lyme-Disease-Info-With-A-Bite/122068727823474?ref=ts

Twitter-
http://twitter.com/lymenaide
http://twitter.com/erut10

YouTube-
http://www.youtube.com/user/lymenaide
We have a prize giveaway going on for the next 4 days on the YouTube channel. Subscribe to the channel, watch the videos, and leave a comment telling us which PSA is your favorite and why. Easy!

Blogs-
http://lymenaide.com/
http://lymebites.com/

Thanks so much for all that you have already done to help us bring Lyme disease to the Public Eye and for all that I know you will continue to do. Working together as a united front we can accomplish anything!

Ashley