Posts Tagged ‘Lymenaide Awareness Campaign’

Lyme Disease Awareness Bracelets Are Here!!

// June 28th, 2010 // 12 Comments » // Eric's Blog, LymeBites Blog, Lymenaide Awareness Campaign

ashley lyme green braceletsYes we finally have some Lyme disease awareness bracelets to help with our fundraising! They are “Lyme” green and they simply say Lyme Disease on them.

If you want to purchase them here are the prices-

* 20 for $50 ($2.50 each)
* 10 for $30 ($3.00 each)
* 5 for $17.50 ($3.50 each)
* Under 5 = $4.00 each

To make a purchase send an email to Ashley at ashvantol@lymenaide.com or Eric at ericrutulante@lymebites.com, we will give you the link to pay through PayPal or the instruction to pay by check.

Thanks!

We Need A Fight Song For Lyme Disease, And Perhaps A Cheer Team To Sing It – FIGHT FIGHT FIGHT

// June 22nd, 2010 // 1 Comment » // LymeBites Blog, Lymenaide Awareness Campaign

As the old expression goes, I am full of piss and vinegar tonight.  Not literally, in case you were wondering if I had found some new fangled “cure” for Lyme disease. 

Unfortunately my body feels like I am still recovering from a hike up Mt. Everest, so it’s a little hard to act like someone who is full of piss and vinegar.  But let me cover a few key points of what is going on.

Hopefully you all read Ashley’s post yesterday about how united we can conquer this disease, as she introduced the new Lyme awareness team and gave an update to her readers as to what is happening with Lymenaide.  This changes nothing about LymeBites, except that in addition to what I’ve bee doing all alone we will now have Ashley and Candice both blogging from here on LymeBites.  While I will continue to write and let you all along for my journey through Lyme disease, the site will just be expanding with even more information and great writers on it. 

But I’m not one for being kept quiet, and while I’m sick, spending so much time in bed, the only way for me to make noise is with my laptop, that’s sort of how LymeBites began in the first place.  And so it will continue to be. 

I am THRILLED to be part of this amazing team.  If you haven’t gone on to check out Nani’s site and Candice’s blog, I implore you to do so.  Along with Ashley and myself, they help to make an amazing team committed to working together with you, and everyone else effected by this disease, to bring about some major awareness of this disease. 

We thank you all for being our faithful readers and fans, and look forward to continuing to earn and deserve the faith you have in us.  We have a lot of really exciting awareness projects coming up, and are joining forces with some other amazing organizations and causes for fundraising efforts.  This is an exciting time in Lyme disease, as anyone can tell you the past two years have brought an explosion of exposure to Lyme disease in many ways.  From the high numbers of people infected with the disease, to awareness efforts of some amazing groups and people.  We are excited to join the fight at such a crucial time in the disease when we have the opportunity to use our voices and our experiences to help stop others from this awful disease. 

So you will notice changes to LymeBites as far as the layout and design go as it slowly expands into a larger site.  At the same time Lymenaide is having it’s transition, we will be welcoming the additions to the LymeBites team.  But have no fear, I will continue as my aunt says “be funny in a funny sort of way” as I try to share my story with you.  Sometimes it will make you cry, and a lot of times I hope it will make you laugh.  Because when fighting Lyme disease it’s important you do both, laugh and cry…they are both good for your soul and in your journey towards healing.

In the meantime, we are interested to hear what topics or ideas you guys might have that you want us to write about or include in our posts.  Please send any topics or ideas to LymeBitesDotCom@yahoo.com where we will see what we can do to address them. 

We cannot let Lyme disease win.  Those of us who are sick, we must beat it.  We must fight for that.  Those of you who are not sick, we cannot let Lyme disease claim you as a victum.  We must fight for that.  Thank you for taking part in this fight, on both levels.  We will not lose this fight, we cannot lose it.

Interview with Candice Accola on Lyme Disease

// June 16th, 2010 // No Comments » // Uncategorized

Candice Accola, one of our angels from the PSA’s, and from the show The Vampire Diaries, speaks with Liol magazine (who also interviewed our very own Ashley van Tol) on Lyme disease, her part in the PSA’s and her friend Teri.  She also mentions Teri’s mother Helen, who many of you on Facebook know and who has shared some of her Lyme poetry on LymeBites. 

Check out her interview…and thanks again to Candice for taking a stand for Lyme disease and for her friend Teri.

A Priest, A Rabbi, and a Tick Walk Into A Bar…

// June 12th, 2010 // 24 Comments » // LymeBites Blog, Lymenaide Awareness Campaign

…okay, I have no joke to go along with that, I just wanted to get your attention.  Writing these posts are the easy part, it’s the titles that are tricky!

At about 2am last night I began a herx of which I have not seen in many months.  I’ve only had one that bad since I began treatment a year ago.  (For those new to the lingo, a herx reaction is what happens when antibiotics kill the Lyme bacteria, the bacteria die off often makes you feel worse than the disease itself, but it’s a good sign because the bugs are dying…you just have to give your body time to get rid of them).

So today is not my best day for writing.  After a night like that my entire body is just worn out.  In fact I couldn’t drive today to go to a function I had in Albany, but instead had to have my Mom drive me up so I could still make it to a gathering of my office mates and co-workers (which I guess is really the same thing). 

But today is an important day that I really have to write about, if only for a brief time, and if done while in the throws of a herx reaction.

It was one year ago today in the middle of the afternoon my phone rang, it was my Dr.  “Eric” she said, just beaming with excitement, “guess what!  You have Lyme disease!  Isn’t that great?  Everyone here in the office said they’ve never seen anyone get so excited about someone having Lyme disease, but I told them there has been something wrong with this guy and we just couldn’t figure it out!”  She told me she’d call me in 3 weeks of doxycyline and I’d feel better in a few days.  I figured I’d even be able to make the Dave Matthews Band concert 2 days later if I was gonna feel good that quick.

On that day, one year ago today I was so happy it wasn’t MS, or Chiari, or a brain tumor.  It was something that would just go away.

A year later, well over $40,000 out of pocket, 8 different types of antibiotics, countless supplements and natural medicines, and 365 days of stress and worry for my loved ones, I can honestly tell you that never in my wildest dreams could I have EVER imagined what I was in for.

Under Our Skin was just showing in Albany that next week.  By that point in time I was so sick I was calling friends to tell them what things they needed to come and get out of my apartment because I was sure I was going to die.  That was my first herx, but nobody told me that would happen.  After seeing the trailer for Under Our Skin my friend Mark said to me “you realize you may never get better?  I watched that trailer and then did some reading, some people never get over that sh*t (he always had a way with words)”.  I told him his glass was always half empty, there was no way I could be sick forever.  Lyme disease was not a problem.  If it was I would know about it since I grew up and spent all but 4 years of my life living in the heart of Lyme disease country.

But I was wrong.  Almost deadly wrong.  I honestly believe to this day if  I had not found Dr’s who were willing to treat me (at first it was people who didn’t know what to do for me, but they knew they had to do SOMETHING) that I would not have made it.  I know I was close to death on several occasions.  And yet, I was wrong.  Somehow I had lived here all that time, surrounded by Lyme disease all that time, and I didn’t know a damn thing about what Lyme disease could do, all that time.

I still look back on one year ago today and wish it was a different diagnosis.  Even cancer, because I could have either fought it or died from it, but at least there would be an outcome.  Now with Lyme, I don’t know if I’ll ever have an outcome.

So that brings me to my point.  And to all my friends and family who do not have Lyme, I do not apologize for the constant flow of emails I send out to you, to those of you on Facebook I do not apologize for post after post about Lyme disease.  I do not apologize because nobody told me what could come of Lyme disease, and I wish every day that someone had so that I wouldn’t be in the condition I am in now. 

So I am going to fight to make sure each and every one of you know that this is what Lyme is.  This is what Lyme does.  This is what Lyme looks like.  This is the face of Lyme disease. 

face of lyme crying 

I can’t let this happen to another generation of people.  That is why today, one year after the diagnosis and promise that I’d be better in a few days, I am so proud to be part of a team with Ashley, Nani and Candice, as well as the hundreds of others who help us on a daily basis to get the word out there that Lyme disease can kill you.  And if it doesn’t kill you, it will take away your life.  So we join as a community to continue to fight to save lives.  Will you commit to join with us in making sure others don’t suffer like this?

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