Katie & Joe Simon's wedding in Hawaii

 

When did your journey with Lyme begin?

My journey with Lyme disease probably began when I was first bit by ticks as a child, but I maintained a reasonably functional level of health up until 2012. Although, now looking back, I cannot really recall a time in my life when I was completely symptom-free for extended periods of time. I tried to manage many of those symptoms with prescription medications starting at 19 years old. As you begin to recover for the first time, you realize what being healthy really means, so I’ve had a new awareness of what true health is supposed to feel like going through this process.

Was there a turning point in your journey?

This road to recovery is not easy, straight, or without many ups and downs. However, I know that a big turning point for me was when I listened to my intuition and started seeking out more functional, holistic-minded doctors. I was led down a path that eventually brought me to Sophia Health Institute (and Market Place Naturopathic and Holistic Healing Arts) in Washington, working with Klinghardt trained doctors who have helped me realize that real healing is possible. Conventional frameworks did not provide me with answers, nor did they resonate with me. Another turning point was honing in on my mental and emotional health and using mostly different types of energy medicine and therapies to address those blockages.

 What are some of your favorite tools for healing?

Being in nature, preferably bare feet in the sand and in/near the ocean. ART (autonomic response testing) has been a major breakthrough for me, as well as ozone therapy and neural therapy/injections. This has been said many times on this series, but coffee enemas and colon hydrotherapy have provided me with some of the most immediate results and symptom relief. As one of my doctors has stated, “once you’re fully symptomatic, doing an enema doesn’t sound like a big deal” and that is the truth! I love hot detox baths with a variety of salts, clays, essential oils, hydrogen peroxide, and apple cider vinegar. Another big one is CBD and then body work and energy work as often as possible: acupuncture, EFT, and reiki have been very instrumental as supportive therapies.

 What’s one thing you wish others knew about living with Lyme Disease?

Just because I have what appear to be set backs, it doesn’t mean I’m not still on a path to healing and recovering. As a society we want instant gratification, and that is unfortunately not how it works with this disease (or almost anything worthwhile). It’s really hard to keep that mindset when you’re desperately wanting to feel better, but it’s even harder if others around you are questioning your progress and not being understanding of your inevitable flaring of symptoms. I think another important thing to note is that I’m still me. I may live a more limited lifestyle. I may not have all the same interests as before I got really ill, but that’s not because of Lyme disease, it’s because I’m an evolving human being. I also wish it was more understood that Lyme disease in a chronic state is probably better described as Multi-Systemic Infectious Disease Syndrome.

 What’s one thing you wish you could tell individuals who have just been diagnosed?

Become your own advocate. You have to take a very active role in your recovery, and though this can be overwhelming at times, it’s very empowering. But you shouldn’t do it all alone either. Find a doctor that resonates with you and believes you can recover. Remember that there are many paths to healing, so my path (even if we see the same doctors) may not be your path. I think it’s also important to consider what other factors are contributing to your health aside from Lyme disease (and the associated tick-borne diseases). What is your viral load like? What about your genetic makeup and ability to detox? What about environmental factors like mold and metal toxicity?

With the right assistance, and a lot of patience and endurance, I truly believe our bodies have the innate ability to heal themselves. Obviously, I’m not saying this means forgo treatment, I’m saying that treatment can work BECAUSE of this. Healing happens, and it is possible. I also HIGHLY recommend signing up for the Lyme Less Live More series! It’s one of the best resources I’ve found. http://lymelesslivemore.com.

Another really great resource is the Well Scent practitioner interviews! 🙂

 What’s been your biggest obstacle in your healing journey?

I think my obstacles change a lot depending on where I’m at in treatment. Lately my pain levels and POTS have been pretty big obstacles that keep me from doing some of the things I was doing just a couple months ago. The most obvious for everyone is that finances can be a real struggle. Finances do not equate to a cure but it certainly makes things easier in terms of accessibility. For me, it’s also living in places where I have to travel far distances to access treatment and supportive therapies. Almost all of my treatment has been paid for out of pocket and that is not an easy pill to swallow, especially since I started getting really sick out of college right when I started trying to pay back college loans. Lately, it is being cognizant of my surroundings and how people and places can affect my ability to stay in a healthy mindset.

 Do you have a spiritual practice? How does that help?

I do. I definitely believe in the power of prayer and for me, having God in my life makes it much easier to have faith amidst the chaos. Meditation, tapping (EFT), breathing exercises, affirmations, prayer, writing, and practicing gratitude are all instrumental to my well being. I think it’s really important to find ways to get outside of your own head. For me, one of my earliest symptoms was crippling panic attacks and having tools to re-set my body when I start going down rabbit holes has been so helpful.

 What has been your biggest victory in your healing journey, and how did you overcome that obstacle?

I think my biggest victory was letting go of some of the anger and fear that surrounds this illness. When I was first figuring out all the things that were wrong with me I was so afraid and angry. Don’t get me wrong, it’s STILL those things, but disconnecting myself from the politics of Lyme to some degree has helped me maintain a healthier relationship with the recovery process. When I was first starting on a treatment plan, I wanted to get back to my old life/ways, and get back to “contributing” to society. Now I’m realizing that since the moment I was diagnosed and became part of this community, I began contributing to society in ways that are sometimes bigger than when I was on a mainstream path. I think that going through this has helped me live more authentically, and will open doors for me to do inspiring things now and when I am well. I also realized that whatever you believe and say can become your truth. Being sick is not my truth.

What are your hopes and dreams for your future?

 I want to help others heal; I want to run again; I want to go on crazy long hikes in beautiful places; I want to travel; I want to eat without food intolerances; I want to see lots of live music and drink beer occasionally; I want to get married and have a family one day, and of course adopt more dogs. I also want to spend more time with friends.

What are some of the things you have learned as part of this experience?

I’ve learned to let go of a lot of things that were part of my ‘old life’ because they were not good for me, or maybe kept me from living authentically. This has been a very hard lesson, and one I’m still learning. It’s hard to not grieve the loss of your ‘old life’, but I’m starting to see this as more of a rebirth, and feel really grateful for the opportunities I’ve been given to heal. “You will find that it is necessary to let things go; simply for the reason that they are heavy.” I think you have to constantly search out the light.

Words, Well Scent

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