This group is open to anyone who lives with at least one disability. Whether by chronic illness, injury during service, genetic disabilities, hearing, sight, etc etc.. we want to get to know each other on another level, talk about a few things including ableism, how you deal with judgment, and whatever might be on your mind.
We are also open to caregivers, friends, and family.. If you want to understand a loved one a little bit more, we welcome you!
Please email me (Anna Hart) if you would like to join the meeting!
When you see a glass in front of you, do you view it as half-full or half-empty?
This really is a serious question you should look at; how do you view life?
When you are faced with a dire situation do you spring into action… or shut down completely?
Do you take flight, or do you fight?
When dealing with tick borne infections you need the self-discipline and the drive to shape your own life for the best possible outcome. No one else can do this for you.
If you need, reach out to an advocate, a mentor, or a Lyme Life Coach. (Yes, they exist!) You can write into a BorreliaEtc group for your area, or inquire at places like GLA’s Peer program.
In fact, if you are a patient (or if you have a family member with tick infections) please do yourself a huge favor and get The Lyme Ease Survival Guidebook by a dear friend of mine, Jenn Hyla.
It is a small book packed with great information on BorreliaEtc. And it’s very affordable. It will help you in “Separating Facts from Fiction to Educate and Empower Lyme Patients”
Jenn is a Lyme Conqueror who mentors Lyme Warriors. She’s been down this path herself, she has a lot of brilliant ideas and she holds online classes/workshops – or she will work with you directly via phone and/or email if she’s able! I cannot stress enough the value of this book.
If you find it a good read, please get a copy for your local doctors and nurses! Or your library! This is information that should be available to all. I’m educating a new primary care doctor about these infections and am bringing her book in today.
But that will have to be a topic for another time, have to get dressed.
Here is my contribution to the subject of the social drama people who live with Lyme Disease face in terms of relationships. –João
Lyme Disease is rare in Brazil and people do not know what it means to live every day with the resulting suffering. The symptoms my partner has shown like Lyme’s poliarthrits and chronic fatigue are still mild compared to those of other Lyme Disease patients who have much more neurological damage, including memory problems and speech difficulties, mental fog and lethargy. Or those who have their heart compromised by the progression of the disease. There are cases of sudden deafness, loss of vision and facial paralysis.
We know that every chronic disease represents a great test in the life of the patient and his family. It takes courage and it takes a lot of strength to deal with the situation. Living with Lyme is not easy: the treatments are expensive and exhausting for the patient and family. The immune system is compromised and autoimmune diseases can unfold.
The prolongation of this disease weakens the patient’s body and brings enormous stress to both him and his family; the latter needs enormous dedication to take care of their professional work, children, household activities and provide the necessary attention to the patient who suffers from the disease of Lyme.
We are led to study as much as possible to know the disease and look for ways to overcome it, which consumes a lot of time and energy. We make many unsuccessful attempts at treatment, which brings frustration and discouragement. We need to seek the strength of faith, hope, and confidence renewed every day – every moment – so that we don’t get emotionally out of balance and don’t get sick even more.
Emotional imbalance aggravates the condition enormously and we cannot allow for the negative evolution of the condition, as new and more serious symptoms can always appear.
We know other people who suffer from Lyme Disease as my partner does. All of them have their life stories very marked by the suffering of this pathology, as well as our family.
Some carry a feeling of sadness for the way the people closest to them deal with their health situation. There is a great lament regarding the incomprehension on the part of partners, family, relatives, friends and known people, who either turn their backs and fail to give them attention and care, or react with indifference or anger in the face of the difficulty that arises. Stressed husbands, mothers and fathers who do not believe in the pain and fatigue caused by Lyme Disease (as they think it is purely “psychological”).
Friends who disappear, who abandon the patient during the most difficult situation of their lives, cause more trauma that only compounds the negativity of the disease.
For this reason I decided to write this text. As difficult as the situation we are going through, we need to seek patience, acceptance, calm and flexibility to deal with the challenges of Lyme Disease. Medical support and a wide range of therapies are necessary. But the fraternal presence of other friends, relatives, family members, partners and companions is very important to be able to face all the limitations and problems brought by this framework.
Our society unfortunately does not teach us to deal with the suffering of others. We often see someone close to us in a clear situation of despondency, weakness and pain, but we simply turn away and move on. We shy away from offering a smile, a consoling word, a conversation that distracts or just silent company and peaceful coexistence. We make snap judgments about those who are living the test of a very serious illness in the family, which borders on despair at many times, without trying to understand what they are really going through and why they are in this situation, without asking, ‘what we can offer as a form of help,’ if not at least respect and recognition for another human being and his afflictions.
Providing Lyme patients with care, attention, affection, understanding and tolerance is a gesture of love and a way to show the other that we care, that the person is valuable to us, that we nurture affection for them. Words are important vehicles of message, but they never substitute actions.
Acting on behalf of the one who is suffering is not as difficult as it appears. If each relative, friends and acquaintances can do something for the Lyme Disease patient within their circle, directing as much of their attention and time as possible, a huge current of love and care is formed that helps a lot in healing the patient.
João Augusto de Andrade Neto – Paraty, Rio de Janeiro, Brasil
January 23, 2021 (shortened and translated to English on July 13, 2021, and posted to Facebook: https://m.facebook.com/groups/1765246543770673/permalink/2581711442124175/ )
By Lorraine Hart
It’s May, and I find myself wanting to be on that grassy triangle at the Purdy traffic lights. This will be the first time in fifteen years I haven’t held our Washington Lyme Rally, holding my, “Lyme Lives Here” sign, and waving to the cars. I began the rallies on my own, earlier in Anna’s twenty-plus years of dealing with Borrelia etc, before she was officially diagnosed—and my frustration with medical politics has continued to make me (and those who have joined me) haul out signs yearly, and wave at passing people. I’m not Chicken Little, the sky is not falling, but the first epidemic of climate change is already here. As our planet warms, cases of vector-borne illnesses double, triple, and we don’t know enough. Our aim is always to reach out to our community with education, not wanting other families to face what we’ve had to, for decades now.
But this is the year of Covid-19 and, trust me, I take the social-distancing very seriously with Anna’s lack of immunities. Though it breaks my heart to cancel, we must. Now, that doesn’t mean I don’t still want to shout from every rooftop:
1. Yes, there are ticks in Washington, and a good percentage of them carry diseases, both bacterial and viral. We have not responded to this crisis early enough! We need state-wide tick drags to gather statistics, and we need better testing. (That last phrase echoes weirdly in my brain)
4. Education—from the general public, to doctors, nurses, and the rest of the medical system. It’s time to UN-learn the, “difficult to get, easy to cure” mantra of those who seek profit over care. Time to learn the truth about these diseases, their origins (Bitten, by Kris Newby is an education in itself) and how to help patients who really, truthfully, suffer. It’s time for a public-awareness program to teach prevention, and what to do when bitten (save that tick, much easier to test!). This could begin with a Proclamation, declaring May, every year, as “Lyme-Awareness Month” with public-service announcements, perhaps programs through the Parks Department.You won’t see us at the Purdy lights this year, but rest assured, we activists are still working on behalf of our communities. We may not be able to get together in person, but we’re working on a Bill to present in Olympia. Nothing but the facts, ma’am—we’re turning our backs on the politics, and presenting a Bill about educating Washingtonians on the basics of preventing tick bites, recognizing ticks, and symptoms of infections. While we take care, specifically in this C-19 crisis, we still can’t stop trying to warn of the epidemic already creeping through the perfect climate of Washington today.
Update 2021: these classes have been discontinued due to strange new neurological symptoms I’ve been dealing with. If you are at all interested in learning more about Qigong please explore YouTube, there are many wonderful resources. Or send us a message at BorreliaEtc@gmail.com
AJ, Mum (my Caregiver), and I have been working on a gentle session of Qigong suited especially for the chronically ill.
Movements we explore:
If you are bedbound, let me ask you this: can you still close your eyes and use the power of your imagination? Think of raising your arms above your head, and move what is called your Light Body without any effort from your Physical Body. This will still move your energy around.
Make sure you have a chair or a bed close by so you can change positions when and if needed. These practices can all be done in bed, sitting down or standing up. You do what you can, nothing more.
Moving is a vital part to recovery, and I’ve not found anything else more suited to the healing process.
A couple of videos I’d love everyone in the BorreliaEtc Community to see are:
Viv is a BorreliaEtc patient and activist… but she fought for twenty years and without any recompense (spiritual or physical) ..so she became burned out. Then a friend mentioned Qigong to her and she was off on a quest of compassion.
Viv explains how she started to practice before she could move any part of her body and why that works. She also takes you through a little practice to relax the body.
If you have any questions please leave a comment below!
See you in the Qi field!
Qigong has been a game changer in my family’s health. My brother AJ brought us this lifestyle after turning his own life around..
He was a fast-paced urbanite living in NYC, selling high end furniture to some very big names. He had a lavish life until the 2008 financial crisis, when he lost almost everything and came out West to be closer to his family. The following depression he experienced was extremely difficult, but he turned his life back around by learning the premise and practice of Qigong.
What brought him so much joy of course had to be shared – our mother found benefit to her EDS with practice as did I for BorreliaEtc. I loved the basic moves, and then one day in mid-winter 2018 made me a “believer”of the whole healing package.
After having a seizure, or seizure-like episode, I was left unable to think nor speak. I couldn’t communicate with anyone, but I could imitate. I started following AJ in the breathing exercise, and just three deep breaths later I was able to think and converse again.
That was all the “proof” I needed.
AJ has been leading Qigong classes at a local athletic club, and now (especially good timing with COVID-19) he’s starting to offer video classes with Zoom.us
So please join these sessions if that pleases you! He will be available every morning (weekends too!) at 9:30a* for an Awaken Vitality session:
Zoom Meeting ID: 113-922-499
(No password needed)
On the android mobile app it will look like this:
All you need to do is download Zoom (a free app – just visit the Play/Apple Store. Also available on your browser) and click/tap “Join” to enter the Meeting ID Number.
There is a second daily meeting available at 4p* called “Qi & Tea ~ Let’s Talk” so we can discuss the focuses of Qigong and so AJ can answer any questions. This might be a time of learning a new move, or doing a simple, guided practice… but it will not be intended for serious practice.
Those with chronic illnesses will absolutely want to join this later discussion and feel the gentle welcome to Qigong without being thrown into a full session that might be too demanding (at first) for a body that is seeking health and wellness. And if we get the interest from people with BorreliaEtc AJ may make another meeting specifically for us. 🙂 We’ll see how the Universe unfolds.
Qi & Tea; Let’s Talk! (4p)
Zoom Meeting ID: 391-063-607
If you want to talk to AJ directly please email him at MisterAJR1@gmail.com
*Pacific time zone always, if you are elsewhere in the world please contact us so we can figure out what time for you!
We’ve booked Wapato Park, the Main Picnic Area for the 2nd Saturday of September. This is an absolutely beautiful park in South Tacoma; if you’ve never been before you are in for a treat!
Tucked away in lots of trees and behind a waterfall is a lake with a level ground to walk around, a children’s playground, an off-leash dog park, walking trails – there’s even a dock for fishing! (No licence required!)
We have Pranayama Yoga, Qigong and Meditation practitioners among us, I’m sure you’ll find something you enjoy and relate to!
As normal, all we truly “plan” for is an afternoon of relaxation, conversation, support and sharing with wonderful people and equally wonderful food.
There is no cost to attend; if you wish to donate towards next year’s picnic there will be a donation box but it is entirely voluntary.
Who: patients with chronic, complex illnesses and those who support them (family, friends, medical professionals, other interested community supporters and even well-behaved four-legged friends).
If you have any questions or concerns, please leave a comment or email me!
Please try to AVOID the following ingredients:
The topic of Adverse Childhood Events is extremely important and relevant in our community.
Dr. Burke Harris says very simply: when you, as a child, are exposed continually to traumatic events the hormones always in play can physically alter your growth.
If you have one ACE, you’re more likely to develop illness as an adult. If you have 4, those odds shoot up.
Some ACEs are:
My score is 3. I wonder how my childhood paved the way for my immune system to not handle disease well when I was bitten by ticks.
I was watching this YouTube:
It grabs my attention because Dr. Burke talked about how Lyme disease intrigued her.
*sits up straight*
Did I just hear that right?
The CG had the same look, so yep, I heard that right! She said Lyme disease. She even named the causative bacterium correctly!
I had to put up a comment. I even forgot to change from my old gmail to BorreliaEtc. But this got me thinking and I tend to forget “little” things like that.
I was intrigued when Dr. Burke started talking about Lyme disease being a topic of interest to her (given that a cluster of kids with RA in the same area of Connecticut were found to have the same exposure to disease-carrying ticks). But just like there isn’t just one adverse childhood event on the list, ticks don’t carry only one bacterium. They carry far more than the one bacterium Dr Burke Harris mentioned. Not only are there other types of Borrelia than B burgdorferi – there’s Ehrlichia, Babesia, Rickettsia, Bartonella and more.
So bringing this conversation back to ACEs – before I was 18 I was traveling, and while camping I was bitten by two ticks. I got sick in a matter of days, very sick. I went to my doctor upon getting home. I was so nauseated that I couldn’t keep water down; I threw up every day for 6 months straight. My doctor diagnosed me with heartburn and later I found out he mentioned bulimia in his records. Those appointments were hard on me and I often left in tears.
I had a very real, PHYSICAL problem and was ridiculed by my doctor as an attention-seeking problem girl.
I already had an alcoholic parent, divorce, and emotional neglect on my ACEs score (3). But I’m curious if the doctor’s abuse would be another point?
This topic has brought a whole new level of awareness to my family (my mother and her siblings have 7-9 ACEs scores) and we have Dr Burke’s book. But we do wonder if there is something that might be done for adults that have experienced this, like myself. (I turn 39 in December.) I love the work being done on kids and do hope to see meditation being taught/practised in schools once day just like the epilogue in her book says. But what do we do about the here and now? I and my family have a number of health problems.
Doubt if it’ll get a response, but I’ll never know if I don’t try. Oh, and sorry for the repeats here.