Archive for Family of Lyme

I Know Why the Caged Bird Sings…

// July 12th, 2010 // 2 Comments » // Family of Lyme, Fundraising for Lymies, Guest Authors

Shared with us by, Helen Raser.
Written by, Katie Johnston

Meet my beautiful friend Birdie…
One day soon we’ll take on the world again. Keep your head up, sister.

“I know why the caged bird sings, ah me,
When his wing is bruised and his bosom sore,
When he beats his bars and would be free;
It is not a carol of joy or glee,
But a prayer that he sends from his heart’s deep core,
But a plea, that upward to Heaven he flings –
I know why the caged bird sings.”

(Please stay with me here and read this all the way through)

As you all know, I’m currently planning an event called “F U Lyme” at The Other Bar this Thursday, to help raise money for a lady by the name of Elizabeth Chalker. I had the privilege of hearing Elizabeth Chalker’s story from my dear friend and advisor, Helen Raser. What you need to know about Elizabeth is this: She’s 39 years old, was once an accomplished (PhD) Forensic and Sports Psychologist and athlete. Her passion was helping at risk youth and their families, often without payment. Currently, Elizabeth is dying from Late Stage Lyme Disease & Co-Infecions, as well as Lyme-induced Endometriosis, which have virtually taken over her body. Multiple organs and systems are shutting down. Due to medical ignorance surrounding Lyme disease, she has been suffering for over 20 years, debilitated the last 7 years. Without appropriate treatment she will die an agonizing death.

Elizabeth’s body is wracked with pain 24 hours a day – uncontrollable muscle twitches – daily migraines – seizures – convulsions – constant nausea and dizziness – extreme light and sound sensitivity – excruciating bone and organ pain – inability to sleep more than ½ hour at a time – inability to stand long without blacking out – And with virtually no family to help, she lives alone in a cold, dark apartment, in constant agony. Elizabeth’s only chance for the life saving treatment she desperately needs is in Washington State . But treatment will take years and hundreds of thousands of dollars.

In spite of this indescribable torture, Elizabeth has the most amazingly strong spirit and huge heart. She will help anyone who reaches out to her, though no one can help her. Her dream is to be able to dedicate her life to helping others and make a difference in the world. Helping Elizabeth would be like helping thousands. The world needs Elizabeth Chalker.

Although we’re throwing this bash in an attempt to raise money for Elizabeth, it’s also about raising awareness of Lyme. What you really need to know about it, is this: Lyme disease affects MILLIONS around the world, in every state, and on every continent. It is the fastest growing infectious disease, growing at a rate of over 39%, and is 10 times more prevalent than HIV / AIDS. It mimics, causes or contributes to more than 300 other disease and conditions and is frequently misdiagnosed as MS, Lupus, Parkinsons, ALS, Alzeimers, Arthritis, Rheumatoid Arthrits, Fibromyalgia, Chronic Fatigue Syndrome, Psychiatric Disorders, even Cancer, and much more. It can affect every single organ and system in the body, thus causing neurological, cardiac, gastrointestinal, vision, hearing, psychiatric, and many other issues. Yet people are misdiagnosed every day and left to suffer mercilessly and even die.

The State Attorney General of Connecticut launched an investigation of the IDSA Lyme Panel and determined that their guidelines for diagnosing and treating lyme are FLAWED and that panel members had conflicts of interest (IE: ties to insurance companies, pharmaceutical companies, patents, etc). They were ordered to form a new panel and to re-do the guidelines. In the meantime, doctors are operating under those flawed guidelines, denying that Chronic or Late Stage Lyme even exist and that Lyme Disease is rare and easy to treat. And doctors who are willing to become educated and administer proper treatment risk losing their licenses and other penalties. Because of politics, greed and egos, millions of lives are being destroyed. One extremely important life in particular is being destroyed…

Now, onto why this event is so personal for me and back to the caged bird reference… Seven years ago, I met a boy that would change my life, as do most significant people one comes across in this great journey. John became my best friend and soon after, much more than that. He introduced me to a world I never knew existed, whilst also introducing me to one of the most incredible friends I’ll ever have. Life only affords you so many people in life who will actually reciprocate your love for them. Through John, I found an entire family willing to do just that, but more than that, I found my Birdie, the inspiration to all of this madness, to F U Lyme, to the reasons sometimes I find it hard to be empathetic to small problems, to the reasons I only allow myself to be down for only a bit, to the reasons I see the world sometimes with TWO sets of eyes, and to the reason I feel things with TWO hearts… because even though you’re not always able to be with me, Terd, I assure you that you are with me more than you’ll ever know. And while your physical body has not allowed you to experience the world like a 23 year old should, you’ve been with me in spirit on so many occasions.

Cue music, world. Meet Teri Danielle Raser. She’s the most beautiful friend I’ve ever had; has the voice of an angel, or of the Jenny Lewises in the world; the innocent laughter of a kid’s first reaction to the tea cup ride at Disney; a heart the size of Texas, scratch that, more like that of the size of all of Africa; dance moves better than Ashlee Simpson (inside joke); and a wit about her that even Rainn Wilson couldn’t contest on his Twitter page. Aside from all of these amazing attributes, the greatest thing about Teri is that she is exactly that friend every friend wants in life, the one who treats you like you want to be treated, the one that makes you a better person just by being in her presence. This is who she’s always been to me… ever since I met her on that sweet summer day 5 years ago.

Since then, Bird & I have shared clothes, gossip, deepest-darkest secrets, belly-aching laughter, beds, concerts – live & in the car, a room for a summer, and the best of times… but most recently, we’ve shared some of the worst. In February of 2007, Teri was struck with something we spent day in and day out chasing, trying to figure out, to understand, only to be misdiagnosed for months on end until finally determining that she, my very best friend, was suffering from Lyme Disease which has since proven to be the biggest battle she, her family, and her friends have had to fight yet. (Read more of her story from her brother’s eyes here: http://gospeedraser.com/2009/02/22/under-our-skin/ & http://gospeedraser.com/causes/).

For the last 3.5 years, Bird has endured treatments after treatment, IV therapy, medication post medication post medication, and days and nights on end spent lying in bed, unable some days to even walk down the stairs for family dinner. Her symptoms match closely to those of Elizabeth’s listed above. Too physically sick to stay on her own, Teri was forced to leave Miami mid-sophomore year, at the height of her college career, dominating UM’s best blog, working for a couture fashion designer, all the while owning the Miami social scene. And now her life consists of TV shows on DVR, a very cute and large mini-Shetland look-alike pup Ziggy & his big but smaller brother Hurley, adorable cousins Liv & Iz to brighten the day, occasional phone calls or texts from friends, daily visits from Eva/Chris/John/her parents,.. and finally Grandpa Joe sessions with me when time & her health allows.

The point of all of this story-telling is simply this: if you’re in the area, I’m asking you ever so kindly to show your face at this F U Lyme event this Thursday, July 15th from 7-10 PM at The Other Bar, to bring your $5 and if you have more to spare, please do so. (http://www.facebook.com/event.php?eid=142167449131064)

If you don’t live in the area, I’m asking you to donate. Contact me about how. Contact John. Contact Mrs. Helen. If you’re in the area and can’t make it OR if you’re not in the area and can’t donate, fine, fair enough. I understand. Just let this all soak in.

For 5 minutes, think about how fragile life is; how drastically it can change in the blink of an eye or in a matter of a night in Teri’s case; how no matter how bad you might think you have it, someone else probably has it worse; how the Government needs to recognize that Lyme Disease is an epidemic… that this isn’t just a story you heard and need to prove true through Snopes.com. This is real life. And for me, it’s personal. Really personal. So take your 5 minutes, and help me raise awareness, for Elizabeth Chalker, for Teri Raser, for all Lyme victims in the world… and for all of those people in their lives affected by it.

Bird, you once told me I was never allowed to leave your life. I promise you, on everything, I’m not going anywhere. Not now, not ever. I’ll be here every day, every single day… until you can face the sunshine again. And I promise you the sun will shine again. Although I don’t understand why this happened nor do I like whatever purpose this all serves, if ever I believed someone had the strength to turn it all around, I would place bets on you. High bets, at that. And until then, I will happily grandpa joe it right beside you, making bucket lists the world will be envious of, crying when you feel compelled to do so, and laughing obnoxiously loud just when you need it.

Although your body might make you a caged bird, I hear your song and I know why you sing, and one day soon, you will find freedom again. Please know that but most of all, believe it. Believe it with all your heart, because I believe it with all of mine.

THOUGHTS ON VIETNAM AND LYME – ©Karen Angotti

// June 25th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog

(Written and copyrighted by Karen Angotti, printed with permission)

Vietnam. Did you wrinkle your nose and have a bad taste in your mouth when you read the word? If you came of age in the sixties and seventies, then you probably know what I mean about this most unpopular war–uh-oh I’m sorry I mean military action. My husband spent almost a year in that little spot of hell on earth. He was 8 miles from the North Vietnamese border living in a hooch which boasted two foot long rats on the inside and poisonous snake nests underneath. During the rainy season, the sheets were constantly damp and he contracted severe dysentary. His unit was the last stop on the supply line so the only pops that reached them were Frescas, all the better drinks having been snatched up before they reached Quang Tri. But all these were just minor inconveniences compared to the stark realities of war. At twenty years of age he watched friend after friend leave after breakfast and not come home for lunch. Then his turn came and he struggled to land a helicopter filled with smoke while his own flesh was burning. Only two people out of an eight man crew lived through that crash and Frank was one of them. Yes, he had third degree burns on 20 per cent of his body but he was alive. He was medi-vac-ed from Japan to Ft. Sam Houston and, with tears in his eyes, thought that he had never seen a more beautiful sight than the lights and flag of the United States of America. He soon found though that a good many people in the good old U.S.A. were not quite so happy to see him as he was to be back. Vietnam vets were derided, insulted, and even spit upon. He fought back rage while Jane Fonda made millions after sitting in a North Vietnamese anti-aircraft gun pointing it at our soldier boys, and I do mean for the most part boys. But perhaps these people were not the worst because at least they had a position. The others were harder to understand. Like the girlfriend, who wanted to know , “Oh yes, now which side are we fighting for North or South Vietnam?” The apathy was incredible. No matter what your position during the war, I am sure that you can agree with me on two things. One, it was not the soldiers’ fault that our government had entered into this war. And, two, most of the people who were protesting the war were not protesting against the ostensible, lofty reason for the war which was to prevent the spread of Communisim, but against the WAY the war was being fought. Too many lives were being spent trying to fan the flame of war rather than trying to put it out. We had the military might to have ended the war without losing American lives, but our leaders refused to take that course. Instead we had “peace with honor” which had no honor. And within a few months of the armistice, the Communists had overrun not only South Vietnam but Laos and Cambodia killing millions of people.

Now enters–the Lyme Vietnam. Our country is engaged in a war against an enemy which has invaded our borders and whose presence threatens every man, woman, and child. It is an unpopular war. And many would not call it a war, but then they are not involved in the fighting, the hand-to-hand combat, the care of the wounded. Even in the midst of the battle, the soldiers have been insulted, derided, and spit upon as if subjecting them to these hostilities will cause them to withdraw from the battle. Little do these blinded zealots realize that we were drawn into the battle kicking and screaming to be released and that we would like nothing better than to lay down our arms and quit fighting. I don’t know about you, but I would like nothing better than to trash this IV pole, the pills, the bedpan, the feeding tube, the needles, the wheelchair, and other assorted paraphenalia. Quite frankly, after more than two years of carrying bedpans and rarely being able to leave my house because my daughter requires constant care, I am more than willing to quit fighting, IF someone will just stop the Borrelia burgdorferi from their assaults and convince them to return their captured territories.

Unfortunately, this war also has its Jane Fonda, a couple of researchers who have, in essense, turned their guns on their own fellow countrymen. Using unproven rules even stricter than the code from the Geneva Convention, they have defined a very narrow range of enemy action that may precipitate a defense response. This action allows the enemy free reign in many cases much like the Geneva rules left the G.I.’s defenseless if they followed such inane rules as not shooting at a religious statue even if an enemy soldier is hiding in said religious statue and shooting at you and not entering into that demilitarized zone even if someone in there is shooting at you. Like good soldiers, we are supposed to suffer in silence, follow orders, and let the powers that be determine our fate.

Again unfortunately, this war also has ineffectual and untruthful government leaders. Leaders who are more concerned with numbers and statistics than wounded or dying soldiers. Leaders who care more about their own public image than a mere soldier’s private sorrows. Leaders who want to direct the war from the comfort and safety of a cushy, government office. Leaders who are being paid cushy, government salaries to watch us die while they waste the research funds trying to find a better ELISA (an antibody based blood test) when they would not accept the results as valid even if they had one. In a real war, one uses the best weapons not the WWII relics. If we are going to spend research dollars let’s spend it on something that has results everyone can agree upon–a reliable culture.

Let no one kid you, this is a war. And like all wars, there will be one winner, at least, in the intellectual arena. But while the battle is being fought, we patients continue to lose—jobs, homes, families, schooling, life savings, painfree days, and, for some, their very lives. The longer this war takes the more we lose. We must shorten the war by throwing all we have into the battle for in this war there can be no retreat or armistice and the next draft number picked may be your own.

United We Conquer!

// June 21st, 2010 // 4 Comments » // Family of Lyme, Lymenaide Awareness Campaign

hands together

.

United we stand, divided…
we don’t get nearly as much done.

.

You may have noticed that Lymenaide has taken on a distinctly awareness oriented feel. You might be wondering what happened and why there are so many less personal and informative posts than there use to be. Or, you’ve already put two and two together.

Lymenaide is evolving. When I started the Paint May Lyme Green campaign I had no idea where it would lead. Turns out, I’m pretty good at this awareness stuff. I want to continue to fight for Lyme disease awareness.

So do some of my closest friends. We all met online and we all have our own blogs. We also all have the same goals. We believe that as a team we can accomplish much more than we could individually. We have decided to officially join forces.

Lymenaide is becoming “the organization”, an awareness agency dedicated to helping non-profits spread awareness about Lyme disease and other causes. LymeBites is going to be Lymenaide’s official blog (this is where you will find us posting the personal and informative articles that made Lymenaide so popular). Victorious Vixen is going to be heading up our craftivism endeavors.

Think of it as one organization with different departments. That hopefully explains what we are. Now on to who we are.

Ashley van Tol- That’s me! I started Lymenaide about three months into my Lyme treatment. I was a friggin mess at the time. I couldn’t think straight, had a hard time speaking and I was so sensitive to everything sensory my doctor pretty much told me not to leave the house. To top it all off I was completely and utterly lost and confused about what exactly Lyme disease and everything that went along with it was, and what that meant to me and my life.

Nearly a year later I feel almost back to normal. Another reason for there being less posts on Lymenaide and the reason I was able to accomplished so much for Paint May Lyme Green.

From this point on I am going to focus on the awareness projects and fundraising we are planning through Lymenaide. I’m also going to be doing a lot of sewing for our craftivism projects. If you haven’t noticed yet, I love projects! I was the kid at school you always wanted to get stuck with on group projects because it was going to get done and your were going to get an A. I also kicked *ss in home ec. I once got in trouble for sewing too fast.

I will continue blogging as well, mostly about awareness but not exclusively.

Eric Rutulante- I was diagnosed with Lyme disease in June of 2009 after 20 or so years of unexplained illnesses and problems. I began LymeBites in December of that same year, which was about the time the disease began to let go of some of the grip it had on my brain which made it impossible for me to write. LymeBites began to evolve early on, as I met Ashley and began to write for her website along with my own. It was then she had this idea and a vision for the very successful ‘Paint May Lyme Green Campaign’.

I was angry that I had been allowed to get so sick when I grew up in an area that is endemic for Lyme disease. Lyme awareness made the most sense for me to direct my anger towards. I felt of myself as a lost case as far as saving from Lyme disease, but I decided I would be damned if I was going to allow people to go through the living hell that Lyme disease is. If I couldn’t stop my own disease from happening, I could stop others.

The biggest thrill for me in this when we hear of specific examples of people who were prompted by our campaign to get tested for Lyme, only to find out they had it. Through the campaign, and LymeBites I got to work with and get to know Nani and Candice. It’s an honor to work with, and be part of a team of such inspired, motivated and brilliant people. We are committed to save lives through awareness.

Nani Luculescu- Nani may not have Lyme herself but she is an honorary Lymie to us. Her dad has Lyme disease and Nani has become an activist for our cause. She help create some great Lyme facebook groups and she was there helping out with the filming of the PSAs and interviews this May.

Nani is heading up our craftivism department. Through her art and sewing Nani has been promoting Lyme awareness through her projects like Project Lyme Art Quilt. We have lots of plans for the craftivism department! Exciting stuff that you can become involved with. One of the most important goals for this is to raise money for our cause and for the crafter.

Nani will also continue with her efforts contacting politicians and encouraging others to do the same. This is an important piece, as you all know, to our Lyme puzzle.

If you don’t know Nani’s blog, get to know it- Victorious Vixen

Candice Mitchell- I was diagnosed with Late Stage Lyme Disease at age 19, after more than 3 years of suffering mysterious symptoms. By the time I was diagnosed, I was in pretty bad shape, and had to drop out of college at U.C. Davis and move back home with my parents. Upon diagnosis, I assumed that I’d begin to gradually get better, but unfortunately I progressively got worse. Two years after diagnosis, I found myself completely debilitated and completely confined to the house by Lyme, Multiple Chemical Sensitivity and Dysautonomia.

I’m 21 years old now, and have been through the wringer, but over these past couple of months I’ve begun to make improvements for the very first time, and have a new found sense of hope and optimism. Just this past May, I woke up one morning and to my very surprise, found that I could write again. Inspired by Lymenaide and Ashley’s “Paint May Lyme Green” campaign, I started my blog Infectiously Optimistic and began writing for awareness and understanding. I set a goal for myself to touch as many people as I could from my spot on the couch, and to not only educate the community but provide other Lyme patients with much needed hope.

By the time May had ended, I had found myself knee deep in awareness projects, and absolutely loved every minute of it. I was presented with the opportunity to join the Lymenaide team, and didn’t hesitate for a second before accepting. I’m honored to be a part of the team, and can’t wait to see Lymenaide’s bright future pan out.

Others- We aren’t alone in out efforts. We are supported and helped by many people in the Lyme community. The more the merrier we say! If you would like to know what you can do to help us, or you have ideas, send us a message.

Ashley
Awareness/Fundraising
ashvantol@lymenaide.com

Candice
Celebrity/TV Contacts (you can give them, not get them)
cmitch0320@yahoo.com

Eric
General Enquiries/Blog Topic Requests
LymeBitesDotCom@yahoo.com

Nani
Craftivism/Activism
nani@VictoriousVixen.com


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