First, you need to know that I’m really two people.
The first person I am is a woman who has had chronic health issues since 1985. In 1993 I became very sick. I spent the next twenty years visiting numerous doctor’s, having numerous tests run, and being given numerous diagnosis’s.
The second person I am is the person I want to be known for. I am a mother, and wife, who has done the best I could to remain active in the lives of my family. I am a person who has dedicated my life to helping others. I have spent the past 18 years working with children and families in both educational and therapeutic environments. I have worked for OHI, RSU 24, Families United, and most recently I was employed at Kidspeace New England.
What I’m most proud of is becoming a professional martial artist. Despite illness, fatigue and pain, I have earned my third degree black belt, become a state champion, and along with my husband opened a martial arts school. The privilege of teaching children and adults leadership life skills along with teaching martial arts is the most fulfilling experience I could ask for. In teaching leadership skills I have taught my students the importance of community service. In the past two years our students have raised and donated $2000 to local nonprofit organizations.
Unfortunately, this spring, the illness I have been burdened with began overtaking my life in a way that was beyond my control. After years of managing and masking my symptoms I found myself unable to keep the “sick me” at bay. It started to go beyond my control when I was working out with my instructor in Massachusetts. I was training to ready myself to test for fourth degree black belt. During a drill I completely lost the use of my arms. This lasted for a few minutes and needless to say, it scared me.
My symptoms progressed as I sought answers from the local medical community. I attempted to continue working as I slowly slipped downward. Finally, one day at work, my legs stopped working. I finally gave in and accepted I couldn’t force my body to keep going.
I had a friend who spent the summer quietly prompting me to look further into lyme disease as a possible cause for my symptoms. At first I ignored her because I had been tested for lyme three times throughout my adult life. All tests came back negative. I didn’t know that the test I was given is highly inaccurate. It wasn’t until I was sent home after a hospitalization, being told there wasn’t anything that they could do, that I started listening to my friend. I still couldn’t walk. I wasn’t given any referrals or advice as to what I should do next. I was angry, frustrated, and scared. It was then that I began to research chronic lyme.
My aunt referred me to a lyme literate doctor in Washington DC. The week after I was suppose to be in Orlando testing for my fourth degree black belt, I found myself in a wheel chair, in our nations’ capital being given the diagnosis of late stage neurological lyme disease. It took 20 years for me to finally be given the correct diagnosis.
I thought the hardest part of my battle would be finding the diagnosis. I made the assumption that the medical community would fight with me for answers. Never, in a million years, did I think they would give up and send me home with not diagnosis, no plan, leaving me with no hope.
There is something terribly wrong with the fact it is friends and family who helped me find the diagnosis. I bet many of us have the same experience. It should be the medical community recognizing, what I now know to be quite obvious, the symptoms for lyme. Now that I understand lyme, I don’t think it is difficult at all to diagnosis! I am not trained in the medical profession but I am able to learn and observe. What I see is a state full of people who are chronically ill for no apparent reason. I know dozens of people who suffered just as I have, some of those people have found a lyme literate doctor and been diagnosed with confirmation blood work from Igenex. Others, struggle to accept the possibility that what their doctor is telling them is wrong.
Before my lyme diagnosis I knew nothing about the politics associated with this disease. I took a crash course in all things lyme and became my own best advocate. I’m so thankful for the people who bravely dared to tell me my doctors could be wrong. I pay that forward by sharing information on chronic lyme to anyone I come across who have unexplained chronic illness.
I have to be honest:
When I began treatment and became more active in the lyme community. I was surprised by two things. First, I was surprised to find out the mass number of us in this community that is basically hidden from the world. Second, I was surprised at the overwhelming silence due to people being unwilling, for whatever reason, to speak out. I am surprised that in this day in age a disease could be so polarizing and controversial. If my friend hadn’t spoken up, and continued speaking even when I didn’t take her seriously, I would be home sick and scared.
I was so disappointed to discover that I had lost my whole life to a disease that the government denies exists!
I was shocked that there was medicine available to help me, but I couldn’t access that medicine due to cost and my insurances refusal to pay.
This isn’t just unfair, this is criminal!
The CDC failed me with their flawed diagnostic criteria that allowed me to go undiagnosed for twenty years.
The IDSA has failed me by not updating their treatment guidelines to reflect the most recent research.
The medical community failed me by not being better educated on this debilitating disease.
Our community is failing us if they aren’t as outraged by this injustice as we are!
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I carry many titles, wife mother, daughter, sister, aunt martial artist, instructor, educator, friend, Christian. I am adding a new title to my list: ACTIVIST
I am disgusted with the ignorance over a disease that can be so damaging! I’m angered that so little attention is being paid to an epidemic that borderlines being a pandemic! I’m shocked that so many are allowed to suffer silently. I’m saddened that those who are sick are invalidated, being given labels like: hypochondriac, mental, crazy, lazy, attention seeker….
It isn’t ok that those who are sick with Lyme often hide their diagnosis from friends and family due to the negative stigma associated with it.
It isn’t ok that those who DO share it with their family and friends find themselves rejected, judged, and ignored.
It isn’t ok that thousands of the sickest among us are denied treatment because insurance companies won’t pay for it and they can’t afford it.
It isn’t ok that those who are sick find themselves in financial ruin.
It isn’t ok that so many who are sick find themselves alone with their illness.
It isn’t ok that much of this could be prevented with better diagnostic tools and early intervention!
The IDSA guidelines haven’t been changed since 2006. The guidelines don’t reflect the most recent research showing lyme CAN persist and cause a chronic condition. Because of these outdated guidelines the medicine that works best for me isn’t covered by my insurance. The medicine that works best for my husband the insurance only allows for a limited quantity.
By not allowing me the best treatment, my doctors recommended treatment, the treatment that has given me back my ability to walk, I’m not going to be returning back to work as soon as I hoped. By denying my treatment the government is forcing me out of the workplace and home on government assistance.
The CDC stubbornly sticks to their inaccurate 2 tier diagnostic criteria. It’s due to this criteria that most of us have lyme in a chronic form!
Last year the state of Maine passed a law which included a mandate that lyme test results need to state that a negative test doesn’t mean you don’t have lyme. It’s a huge first step, but it’s NOT ENOUGH! We are still far behind other states in our part of the country. Doctor’s need to be educated on how to diagnosis lyme clinically. If I had known 20 years ago when I first suspected I had lyme, not only would I probably not be sick now, but my children wouldn’t be sick either!
The CDC estimates 300,000 new lyme cases every year! Where is the public outcry? Where is the demand for further research?!
There are many reasons for us lymies to be ACTING UP! In fact, if you are listening to this and don’t have lyme, you also should be angry! What if you get infected in the future? It is very probable! Our situation can just as easily be your situation! At the very least, as a tax payer you should be mad. Think of all the people who are disabled who WANT to work and be an active part of their community!
Here is what is most frustrating: those of us who want change bad enough to become activists are also to sick to be very active! We are able to do very little in standing up for ourselves, we are the most motivated, but can’t do a lot!
This isn’t the first time our governance ignored a growing health crisis. Let’s take a second, and compare the lyme disease epidemic to the aid’s epidemic in the 80’s.
In the two year period of 1986-1987 there were between 80-90,0000 new cases of HIV. That is four times the number of new lyme patients every year! It was in 1987 when the AIDS coalition to Unleash Power, better known as “ACT UP” was formed.
There motto was silence = Death
The purpose of this group was to bring about legislation, medical research, and treatment and policies to ultimately bring an end to the disease…….sound familiar?
Why were these changes needed?
The cost of AZT, the best medication at the time was higher then most aids patients could afford
The narrow definition of AIDS from the CDC caused numerous women to be misdiagnosed.
There was a lack of effective and accurate media coverage
Does this sound familiar?
Do you think it was hard for these infected individuals to come forward and speak out?
Do you think they worried about criticism, discrimination, and loss of relationships? Of course they feared these things.
Despite their fears, they knew their lives, and the lives of future generations were at risk. They knew they had a moral obligation to speak out!
Here are a few things they did:
Demonstrated on Wall street and Broadway to demand greater access to experimental AIDS drugs.
The day before the demonstration, the organizer wrote and op/ed piece explaining the issues ACT UP were concerned about.
Act Up members chained themselves to the VIP balcony at the New York Stock Exchange to protest the high cost of the only approved Aids Medication.
They shut down the FDA for a day, it was the largest protest since the Vietnam war.
On April 15th, they protested at the NY post office to catch the attention of all the last minute tax fliers.
Women targeted the CDC for it’s narrow definition of AIDS/HIV
Day of Desperation: 3 ACT UP members entered the CBS Evening News yelling, “Aids in news, Fight Aids not Arabs” (I love this one, if you can’t get the media to pay attention to you…..well you just bring your issue straight to them!)
Are these extreme measures? YES! But it was an extreme situation! Guess What? It worked! Aids now gets billions of dollars ever year for research, diagnosis and prevention. The landscape of the AIDS epidemic has changed dramatically!
WE could now easily exchange the word AIDS for LYME. It is the exact same problem with a different name. Even more scary are the recent studies suggesting that LYME could be and STD. It is the cousin to syphilis. It is a blood born pathogen. Lyme can be passed from mother to fetus during pregnancy and from mother to baby during breast feeding.
I am upset I have been sick for so long and have judged myself for being lazy or a wimp. I’m upset that the doctors who I went to for help were ignorant concerning all the obvious symptoms I had for lyme. I’m upset that finding a lyme literate doctor is so difficult. I’m upset that I gave lyme to my children. I’m upset that I have a medicine that was working for me but it’s to expensive!
I’m ready to act up!
I know we are sick.
I know this battle is physically, emotionally, and financially draining. I also know that nothing will change until our voice is so loud that the CDC and IDSA have not choice but to listen.
Gregg Bordowitz, an early member of ACT UP, said
“ You have to go out there and convince people of the validity of your ideas. You have to go out there and convince people”.
We need to be doing all we can to convince our community this is an issue that needs to take priority. We need to repeat ourselves again and again.
This is an election year. We need to demand our politicians to publicly state where they stand in the great lyme debate. We need to be writing letters, making phone calls, and reaching out to the media on a regular basis. We need to keep talking until the right people listen. It took ten years for ACT UP to see the changes they were seeking. We need to continue on this road until the day where chronic lyme is treated as seriously as every other major illness. If we don’t, how sick will our population be in twenty years?
