I think one of the most difficult thing people with chronic illness have to cope with is getting bad news about our health. In between test results there is a period of hopefulness that can be derailed when the doctor calls with a negative result.
I wrote this article for the Global Lyme Alliance blog with 8 tips for what to do when you get bad news about your health.
You can read it here:
What to Do When You Get Bad New About Your Health
Here’s hoping in the future you get more good news than bad, but we will be here for you either way.
“This journey has always been about reaching your other shore, no matter what it is.” - Diana Nyad
Anastiscia Chantler-Lang is a fierce Lyme advocate. In reading her story you will see how she went to hell and back to be diagnosed and treated. She traveled the world and had many amazing experiences, until she contracted Lyme and everything changed. One of Anistiscia's biggest passions is her art, which is featured throughout the interview and can be see at Art Obsessions Gallery in Lake Tahoe, Nevada.
Tell us a little about who you are and what you do:
Who was I before I was diagnosed with Lyme? I was the creative, bubbly, physically fit girl - an amateur body builder, with the wide smile and big heart, who had a lot to contribute to society. I was a Mental Health Corporate Vocational Counselor with a Masters in Psychology - giving direction, training and hope to those who lost their jobs, a volunteer for youth groups with mental and physical disabilities and drug addictions - while working in government assisted day programs, a corporate English Teacher in Japan and Cambodia, with a fashion design business on the side, and a handbag designer in Rochester, New York. I dedicated time to charities like Habitat for Humanity and women's cancer programs.
Now I am a Lyme disease survivor and warrior who currently teaches corporate English on the computer to South Korean students part-time, and an artist who does a variation of artwork that can be seen in Art Obsesssions Gallery. I am currently studying to become a certified holistic nutritionist and certified holistic health practitioner with specialty in the lymphatic system. My goal is to help those with Lyme disease and to create awareness though my art and my future practitioner vocation. I am newly married for the first time to a loving soul I met at my Lyme treatment and I am currently have relocated from Toronto, Cananda to Lake Tahoe, Nevada.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
I contracted Lyme in 2008, in upstate New York, bulls-eye rash and all. I was violently ill for 2 months, thinking I had the flu and the rash like bruise was as a result of me dropping a free weight on my leg. After 2 months all the symptoms calmed down. Two weeks later I got a tetanus vaccine (there is a lot of literature on the relationship between vaccines/trauma/Lyme trigger) and 8 hours later all hell broke loose and life as I knew it, violently ended. I was mislabelled and misdiagnosed for 6 years.
My life took a very different turn and a heavy hit when I contracted Lyme disease. A downward spiral of over 6 years of misdiagnosis and costly incorrect treatment. I was so violently ill. Every single symptom you could imagine humanly possible I had and relentlessly, there was no reprieve, including partial paralysis on the left side, constant vomiting, constant head and brain swelling, severe dizziness, seizures, the list was endless effecting every system and function of the body. I almost passed away on 3 occasions between 2008 and 2011. I experienced the loss of relationships, finances, ambitious, and dreams. I truly believed I was dying and going to die. Due to out of pocket medical bills my funds were depleting and no doctor could understand what was wrong with me or how to help. I lost my job, my fiancé, my home, and my only remaining relative, my mother passed away. I had been rejected twice from disability and had to hire a pro bono lawyer, as I was going to tribunal. I ended up in a car accident, (hit black ice) which added 2 more years of an additional therapy treatment in 2011. By this time the property I owned in Canada, a condo had slipped out from under me, because I could no longer make payments. I was transient moving from friend's house to friend's house, on occasion my car. In this mess I was still so violently ill on a daily basis - in and out of emergency rooms. At complete rock bottom, by the grace of God I was "adopted" by a Christian family whose daughter was seeing the same Naturopath as myself. A family I did not know, nor did they know me, but took me in anyway. Finally, someone at social services listened to me and could clearly see my need, and I was placed on welfare. A complete blessing and blow at the same time to myself worth and all that I had worked for. Again, another blessing came into play. I got money from the car accident, had my disability tribunal by phone due to my physical circumstances, and was granted monies. These two processes took 5 years to come to fruition. I immediately began to research and hope for treatment in the US, as unfortunately, except for a few brave Canadian doctors, Canada in general does not recognize, nor appropriately treat Lyme disease.
By the time I reached a Lyme treatment clinic in Reno, Nevada in 2014, I had gone into organ failure in 2 organs, and near failure in 2 other organs. It was there, I hung on through a roller coaster journey of 5 months of intensely painful, yet lifesaving treatment. It was also there, I met my now husband, and now we fight together. Am I Lyme free? No. Am I without symptoms? No. Am I debt free? No. Am I alive and functional right now? Yes. Am I hopeful for myself and others that we are creating a voice and new treatments are progressing? YES!
How has your art helped you cope with Lyme disease?
My art has helped me cope, because it is a passion. No matter how big or small if something is a passion you can get lost in it. It can take you away to another realm. It gives me purpose and feelings of joy instead of pain. It gives me self worth again. Every person with Lyme disease has something to give. No matter how big or how small you can make a difference. Have you ever smiled at someone or given a complement to someone who looks like they need it, as much as you do? Well what do you think you just did? Brightened someone’s day. That’s what my art does for me. It helps me to brighten the moments. My hope is to brighten other people’s moments with it, as well.
What was your lowest point and how did you find your way out of it?
When I hit rock bottom, I had already lost my work, my lifestyle, my fiancé, my mother, and so called friends. Then, I ran out of all possible funds, was still violently sick, lost my home and was homeless, full of intense fear and barely even able to fight or fend for myself, I lost my self worth as a person. I had been stripped on every level. Physically, mentally, emotionally, spiritually. It felt like giving up. How did I find my way out? 98% wanted to die, but 2%, that small little bit of rational brain could not accept this hell would all be for nothing. One part of me could not and would not accept this as life, even though it was happening and had been for 6 years. To that one piece of me this did not make sense, since my old life had been all about productivity and meaning. There was an ounce of extremely potent will power to have this not be for nothing. I had to fight the neurological crap I was dealing with and had nothing left to lose but me, so all I could think was simply, “you are ok.” I would repeat it out loud, sometimes for hours on end, “you are okay" - over and over. It was crazy stuff. For me it was refusing to give up, even though most of me wanted to and all circumstances were taunting me to. Brain trickery maybe, and internal faith, in what at the time I didn’t know, it was just there.
What is the one thing that you have found most helpful in treatment?
Everyone responds and reacts with Lyme differently, treatment wise as well, as we all know. Nothing is cookie cutter, nothing about this disease is what orthodox medicine wants you to believe. In my case it started with the Lyme clinic. In severe and chronic cases like mine it was not a cure, but it was a lifesaver. 5 months saved my life. I also found that if there is mold and mycotoxins in the body, that can hinder or slow progress. I am currently working on that. I have my best results with UVB ozone IVs on a bi weekly basis and Argentyn 23 hydrosol silver sprayed up the nose regularly. I also take several strong Doterra oils (in a regime), and I am working with a stricter protocol on that. Of course detox as well, sauna and colema. I can’t say I am a saint when it comes to a strict diet, but it's all organic.
What do you want people to know about Lyme disease?
It is only recently that Lyme disease has become somewhat heard of due to celebrities sharing their stories publicly. Treatment for Lyme disease is extremely complex and requires a combination of modalities over a period of 1 to 3 years or more, with lifelong maintenance protocols to regain a life back and keep it.
Anyone who knows about the devastating disease knows for some people all the treatment is out of pocket and runs in anywhere from conservatively fifty thousand up to hundreds of thousands.
If Lyme disease is not diagnosed early, the Lyme spirochetes will spread through the body, borrow into the organs and tissues, and create detrimental neurological problems, nervous system problems, joint and muscle deterioration, endocrine dysfunction, heart and circulation issues to name a few. It is a painful, often slow tortuous full body systems attack and a relentless symptomology hell. If left untreated it will morph into serious autoimmune diseases and even death. Due to very limited options in other countries, people from all over the world often end up in the United States for costly treatments. The disease does not chose who it wishes to attack. Everyone is up for grabs. There are many articles on the methods and growing rate of infection in the human population. An epidemic cannot keep silent. Regardless of the politics and profiteering behind this disease it has become the fastest growing infectious bacterial disease to date, and not just in the United States. Governments, politicians, the medical establishments need to stop ignoring a huge threat. Elizabeth May of the Canadian Green Party is an example of one such listener. She got the Canadian government to pass a bill on Lyme disease. It calls on the government to call a conference of provincial and territorial ministers, medical experts and representatives of patient groups to develop a comprehensive Lyme disease strategy. The strategy would include a national program to track rates of infections, and establish guidelines for preventing infections, and diagnosing and treating them when they occur. Well, it’s a start. Speaking for myself, I have attempted to contact many Lyme organizations, media, and local government representatives. I can count on one hand the number of people who responded back. What happens when a Senator gets Lyme, when a President gets Lyme, when an accomplished medical doctor gets Lyme? This has already happened. So how many more souls have to get it before it matters? Who is next? Get the real facts, before it gets you.
I also want people to know, those and their families who have been afflicted by Lyme, are the strongest, most determined, and most courageous individuals I have ever seen, who through this journey display exemplary character on so many levels.
If you could take away one symptom, which symptom would you take away and why?
I think that is a very relevant question, since symptomolgy or lack of, is so much a part of the definition of the quality of life - the standard of health, comfort, and happiness experienced by a person. The things that are needed for a good quality of life, right? I know many Lyme patients have the majority of issues neurologically. I completely understand that. I was so there. When it comes to Lyme what would you take away? All of it. This is what those unaffected by Lyme need to understand the level of havoc this superbug does to the human body. In all seriousness one simply has to recall the movie Aliens. In direct answer to the question, for me it would be the constant body joint and bone pain and inflammation, because it's a matter of mobility.
What are you most grateful for in your healing journey?
In the beginning when Lyme came along and threw me into a violent whirlwind of trauma on all levels, and I had not the slightest idea what was happening to me, I was grateful for my mother’s very simple words "You will be OK." Because she knew me the best, I believed her words. I made my brain believe those words, because I wasn’t ready for anything else as an end result. I then became grateful for the little mustard seed of will power and determination I had to overcome the relentless crap. I was so grateful for the circumstances that did keep manifesting and the timing of them, which was of a divine power or energy. For the very few people over 8 years who did not give up on me through emotional encouragement, even though they themselves didn’t know what the hell was going on, including the family who took me in. For the out of the box doctors who were a part of where I am today. For the person I have become emotionally and spiritually and intellectually now. For my now husband who at my most broken time and literally near death, saw through everything and saw a person worthy of joining the fight with. For the individual people with Lyme who don’t give up on this serious global situation.
Do you have a role model in the Lyme community?
I really don’t have a specific role model. There are so many complexities with the disease itself and how it reacts with people and each person ends up in such different circumstances. A friend of mine once said, "This is a silent disease for the rich." In this political, bureaucratic present society I would tend to agree. Just having some contact with various Lyme groups I would say I have an extreme amount of respect for all those I have met and those I have not, but know they are out there and what they go through. I will be very blunt here and say, I have attempted to reach out to many Lyme organizations as well as mainstream media and have sadly gotten very little if any acknowledgment back regarding this critical pandemic (I call it that when you start to really dig into the research and numbers). One organization, Hand in Hand for Lyme Disease, Inc., a nonprofit that helps Lyme persons of all ages in crisis, is run by Laura Ann Watt-Closser. She makes a fantastic role model. Why? Because she experiences the ugliness of this disease day in and day out, but her will, determination, and strength fuel her to reach out and take steps on the frontline with people who need help and to the politicians and government and corporate sectors who could make a difference.
Please share a mantra or quote that inspires you:
As an artist I say: "What the eyes can see, the heart can feel." - Have compassion.
A little voice inside me would always repeat: "A little mustard seed of faith goes a long way." And, "You are Ok." Never drop your mustard seed. You are worthy, so believe it.
A friend recently said to me: "You must always fight, and keep fighting, and sometimes the fight never stops until the end. And there in is your worth." - A part of the voice.
My mother said this to me and I stuck it in my head and it keeps me going to this day: "You will always have a million chances to give up, so why do it right now?" - Pamela Joy Perry
I had an idea to write an essay about how grateful I am for my body. Sometimes we forget that our body is working non-stop to help us get better. It might not be as successful as we'd like, but it works around the clock and never gives up. Most of our immune systems are completely taxed, but they continue to seek out and eliminate invaders.
When I feel run down or am in pain it's easy to blame my body, but instead I should blame the Lyme disease. This essay is a reminder to be kind to you body and give it all the love and help you can.
My essay was published on The Mighty. You can read it though the link below:
My Body Is My Partner Against Lyme Disease
Send along a comment to let me know what you think of the essay.
"I came to see that what constitutes strength is not just muscle or will. It can also include the most desperate vulnerability, the saddest heartache, the lightest, sweetest laughter." - Brenda Shaughnessy
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.