099 Lyme Literate Counselor’s (It’s true, they really do exist!)

LYME Voice

• About My Guest:

  Julie Parker gets the complexities of Lyme and counseling. Too many times, Lyme patients have been told their symptoms are imaginary. They've been referred to multiple specialists, had more tests run than they can count, and are told to seek psychiatric help because nothing is really wrong physically. Then, when a Lyme diagnosis is made, family and friends don't understand the disease or why treatment can make you feel worse before you get better. You can end up isolated and with minimal support. Julie Parker understands what you're going through. Not only is she Lyme Literate (trained to help those with Lyme and other chronic illnesses), but she and family members have Lyme disease and personally know the trials of diagnosis and treatment.

  Key Takeaways:

  • Getting a diagnosis of Lyme disease is at first a relief, because you get some validation that you aren’t crazy. (2:00)
  • Very quickly you begin to understand the reality that treating Lyme disease is a HUGE monster of a task.
  • The treatment process with Lyme is often a miserable and expensive process.
• The complexities of treating Lyme will completely change the way you view mental health. It will change everything about your practice.
• • What I had been taught in grad school about the body and brain connection was completely different than what my patients were saying.
  • In grad school, we were taught that the brain is very powerful and can manifest physical symptoms, as a result of psychological conditions.
  • Now when a client comes to see me with an acute and chronic mental health condition, I’m looking for an organic cause behind what’s happening.
  • What is your brain causing your body to do=old style of counseling? Now I think what is happening in your body, that is impacting your mental health? Throw in the ridiculous aspects that come with Lyme disease-like extreme anxiety, isolation, debilitating fatigue, and the overwhelmingness of finding good treatment.
  • The organic and the psychological are inextricably intertwined.
  • Mainstream therapists routinely fail to realize that the psychological is being “driven” by something organic in the body like an underlying infection. (This isn’t something that most people get)
  • As a Lyme patient, you come to realize the intimate connections between body, mind, and spirit. But you aren’t treated as a whole person within our medical system or our mental health system. Especially when no one knows what is wrong. Or the people in your life don’t know how to support you. Therefore we are often only dealing with a fraction of what is going on within the body.
  • Two realities play out as you try to find answers. One is that the majority of your symptoms are blamed on psychological problems like anxiety or depression. The other is that you are passed from physician to physician without effective psychological support.
  • Chronic pain isn’t just a symptom, it can also be a syndrome. (9:00)
  • I had lived with extreme and chronic pain for years before discovering the fact that “pain clinics” even existed. -Sarah (10:00)
  • There is a disconnect between getting medical, emotional and psychological care.
  • The people who can find the tiniest reason to hold onto HOPE. Sometimes you need someone to Hope-For-You.
  • Mindset: HOPE + Proactive Action (13:00)
  • There is some kind of emotional freedom in coming to the place where you are ok with not surviving.
  • There is also a sense of freedom in choosing to FIGHT for other people when you are ok with dying.
  • Caregiver burnout is a very real thing.
  • Caregivers can feel guilty about taking time for themselves or that time simply doesn’t exist. (17:00)
  • Teens and adult children who are disabled and living at home because of their illness can feel stalled out in life. It is important to talk about what has been lost, the immense grief and helps them to focus on something they “can” do.
  • The spiral of hopelessness can be fueled by other patients who are sick and miserable. You can’t get stuck within the trauma and negativity on social media.
  • Emotional and physical energy is at a premium, use what you have consciously. (21:00)
• “Be spiritually grounded. Know your beliefs and live them. We are hardwired to be engaged in spiritual life.”
• • It is normal to question your thoughts and beliefs when everything is going wrong. When people are working toward being spiritually grounded in their beliefs, it changes their focus.
• Religiosity is different than being spiritually grounded.
• We can go through different emotions (some of which are beneficial) but that is different from digging down and evaluating your beliefs, thoughts, and actions.
• • You can find HOPE in honestly and consciously trying to evaluate where you are at and why. Become aware of what your limiting thoughts and beliefs are. Question them, dig in, is that belief pushing you towards your goals? If not, time for a rewrite.
  • Our spiritual beliefs are often connected to the big “WHY” of what we are doing and who we are doing it for. Why am I doing anything? Is it for me? For a kid or friend?
  • Find a practitioner, coach therapist or treatment program that you can buy into. (27:00) Buy in and then implement.
  • The people that I see who are getting better and staying better for longer are using a combination of allopathic and naturopathic medicine. This combination.
  • Knowing what feeds you spiritually, emotionally and physically will empower you to keep moving in the direction of rejuvenation, or eating a boxed cheesecake in the parking lot. (31:00)

  Ex. Brainless TV, a walk, fishing, reading, playing a game on your phone. Selfcare is about what feeds you.

  • “The illness intrudes on so many aspects of life, that most people can never comprehend, and then those challenging aspects compound.”-Sarah (32:00)
  • PANS/Pandas-When you have kids with both the medical and the psychological issues.
  • Normalizing the struggles they are going through so they know they are not the only ones dealing with this. Explaining the symptoms and validating what they are feeling and experiencing can give them a place that is safe to talk about symptoms.
  • “That’s not the real version of you.” -Julie Parker
  • “It was healing for me to be around other patients that had Lyme because I knew it wasn’t all in my head. They also had atrophied muscles and lost cognitive function in the middle of a story. I was no longer alone in the mystery of dysfunction.”-Sarah
• What is normal? If you have been sick for a long time “sick is normal.”
• • Local support groups serve as a way to be around other people who look like you.
• Lyme Literate Therapist-A safe place for Lyme-families.
• • “This is what normal people do.”- Sarah (Trying to relearn what it means to have fun, be social, live and not just exist).
  • When you have spent years trying to stay alive, you forget how to live, how to laugh and how to love.” -Sarah
  • Guilt and terror are a normal part of the learn to “live” process-It isn’t about regaining a sense of normalcy. Living differently often consists of setting new boundaries so that you can continue to heal.(52:00)
  • As a patient, we have to ask. What is living going to look like for me?
  • You have to be deliberate in choosing to live...do whatever works, whatever feels good, whatever builds you up or brings you life. (57:00)
• “Without boundaries, you can’t heal. I think. I don’t know. But that’s how it’s been for me.” -Sarah
• • Make deliberate decisions to move towards health. Because there are no easy answers. (1:00)
  • In learning how to live-I’m going to do a thing that feels weird but is normal-ish.
  • What will be different in treating Lyme in the year 2040?
  • Kris Newby’s book BITTEN.
• It is an acknowledgment that not only the disease exists. It’s that exists and requires a lot of practitioners and that it is very complicated.
• • We were taught to look at mental health backward.
• Advocacy Wellness-how to live a normal life and be able to speak up for those who cannot. (1:06)
• • “We started Lyme Voice because we wanted to stop the needless suffering. But it is hard to be an advocate in this broken and dysfunctional community of people who are coming together based on trauma.”
• “We don’t have to agree on what the answers are. There is no one right way to heal. No two patients are alike.”-Julie Parker
• “We are all sick. We all need help. Be deliberate. Set boundaries. Choose what is helpful.” -Julie Parker
• • Holy SHIT...it is so much harder than what the “average person” is dealing with. -Sarah
  • Can you help me work out a decision tree?
  • We are all aliens trying to figure out how to get back to healing.
• “The common thread in chronic illnesses is that we all need to be heard.”

• Definitions:

  • PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection. Children with PANDAS may exhibit a variety of emotional and behavioral symptoms and have multiple physical and psychiatric diagnoses. See www.pandasnetwork.org for a starting point to learn about this diagnosis. Please note that the diagnostic criteria are changing and children are NOT required to have a rapid onset of symptoms in order to have PANDAS.
  • PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is similar to PANDAS but caused by other factors and resulting in behavioral changes. Look here for more information.
  • Lyme disease is caused by the Borrelia burgdorferi bacteria and is often missed by medical providers due to faulty medical testing and inaccurate knowledge of symptom presentation. Left untreated or inadequately treated, Lyme can become chronic and evolve into a total-body illness that debilitates.

  Resources Mentioned:

  • Melanie Thurnstrum, The Pain Chronicles
  • Kris Newby, Bitten (The secret history of Lyme disease and biological weapons)

  Connect With My Guest:

  • Meet The Counseling Associates LLC Team...Call us at 901-497-6827 or visit the "Contact" page to send us an email. We'll respond quickly to answer your questions, set up appointments, and help you find the counselor and services that best meet your needs.
  • Link:https://www.counselingassociatesllc.com/our-team

  Links

  • Kangen Water- http://www.lymewater.com/
  • Envita Medical –Envita Medical
  • Lyme Voice Facebook
  • The Lyme Voice Podcast- Lymevoice.com
  • Lyme Documentary-Disappearing From Society, Life with chronic Lyme in 14 minutes…Documentary
  • Little Bite, BIG TROUBLE, available on Amazon –Children’s book about Lyme disease
  • Organic coffee! https://www.ovaldogs.com
  • Tick Warriors “Insect Repellent” https://tickwarriors.com/
  • Organic coffee! https://www.ovaldogs.com
  • Medical billing services MedicalBillGurus.com