How Did We Get Here, Part II

Before diving in, I wanted to thank everyone for reading, promoting and supporting From Lupus to Lyme. My family and I are totally and completely touched by the amount of lovin’ and good juju that has been sent our way. I’ve had more energy this past week than I have had in a long time — there has got to be a correlation there! Also, thank you to those who have had the courage to reach out and share your own stories. We “suppressed immune systems” have to stick together! Please continue doing so — you’re amazing inspiration!

Now, to Part II.

(A reminder, I have put an * next to topics I’ll dive into further in future posts — stay tuned for those!)

2014.

Living in San Francisco.

Lupus not getting any better.

No to chemo.

Come to Jesus Moment.

You go girl.

Now what?

I felt invigorated. But was heading in uncharted waters and my first reaction whenever that happens is to stall…my family, teachers and employers can attest! Alternatives to conventional medicine were not something I had ever explored nor knew anything about. I was hanging onto that voice telling me to change treatment but had no idea what that change looked like.

Around that time, I had started seeing a new therapist. She has since become one of my dearest friends, mentors and earth angels. She is a huge part of my story so we’ll call her Al. We immediately clicked and coincidentally, she was going through similar autoimmune challenges.

When we started exploring my health in our sessions, there was so much anger, shame, guilt, hate, and frustration. These emotions were fresh and real and I had no problem showing them — another way I think my lyme was trying to show its face. During these sessions, Al introduced two unfamiliar emotions: compassion and loving kindness. I was able to (kinda, sorta) define these emotions but it took weeks, if not months, for me to feel them.

I remember one session we had. I must have been in the middle of a flare because I was so disgusted with myself and my lupus. I remember sitting on her couch, growing more uncomfortable as the time passed. I felt sick to my stomach and had an excruciating urge to physically crawl out of my ill body —I didn’t want to be in it anymore. But in her gentle tone, Al asked me simply to put my hand to my heart. That physical connection was all I needed to help feel the sadness and compassion I had shut out. As a culture, we’re often told to “stop feeling sorry for yourself.” Unfortunately, somewhere along the way I think I mistook self-pity for self-compassion.

After that experience, (and lots of other compassion/loving kindness exercises Al had me do in the weeks following) in my heart, I believed that I deserved to be healthy, that I was worth the fight. I appreciated my health, another new concept to me, and was committed to do whatever I needed in order to respect it. It was like I started seeing my health as a friend, someone that was separate from me. It was a friend I wanted to give a big hug and help to heal.

Now that I was ready to explore alternative medicine, I was more engaged in my conversations with Al about general health. She started sharing her journey, the different approaches she tried and why they worked for her. She introduced me to the ideas of functional medicine, naturopathy, energy therapy and using food as medicine.

(Disclaimer: I believe there are undeniable advantages to conventional medicine. I also believe it’s strength lies in more acute and immediate needs. If I have a heart attack, you better believe I’ll be at a hospital in no time, so grateful for their care! Having said that, I also believe alternative medicine has more success in treating chronic illnesses. So, while treating chronic illnesses, I lean more towards alternative medicine. Wouldn’t it be great to find the root cause to prevent myself from winding up in the hospital from that heart attack?)

To start, I decided to reach out to a functional medicine doctor in San Francisco, Dr. S. Functional medicine is becoming a hot topic, but the basic idea behind it is to identify the root cause of diseases through a holistic approach — looking at each patient individually and considering genetics, diet, environment, and lifestyle factors that can influence their long-term health and/or chronic diseases.

Dr. S had been an M.D. for many years, but had left his practice to focus on treating chronically ill patients. The first thing we did was identify my health triggers (inflammatory foods and stress being the top two) and worked to minimize them. Also, as an M.D., he was familiar with the drugs I had been taking all those years and knew how to safely wean me off.

After only a couple of sessions together, we started to see how much damage the medication, environmental toxins and food allergies had done to my body, specifically my digestive system (gut). Almost 80% of our immune systems live in our gut so anything we consume (food, drink, medication, etc.) will have a direct effect on our immunity.* Fortunately, in my case, a lot of the damage would be reversible, but it would take years.

After 8 months, I was on the right track, but it was clear that Dr. S and I had made all the progress we could together. Onto the next!

So, Al introduced me to a new concept: naturopathy. She recommended I see Dr. H, a well respected naturopath in San Francisco who had lots of experience with autoimmune diseases. We started working together in November 2014.

Similar to functional medicine, naturopathy is a form of alternative medicine that favors a holistic approach. Additionally, naturopathy does not abandon the conventional medical model, in fact, they receive the same education as conventional medical doctors up until the approach to treatment. Naturopathy is best known for treating chronic illnesses so I was encouraged to be working with Dr. H.

Immediately, she ordered a full range of tests, from which it was clear my immune and endocrine systems were shot. The results also identified signs of leaky gut, candida, mercury toxicity, dysbiosis and a handful of food sensitivities.* No lyme, no co-infections.*

When we received the test results showing the damage to my digestive system, I decided to grow my team to help support my nutrition. I started working with a Nutritional Consultant, Sal.

Sal taught me that the root cause of most autoimmune/chronic diseases is inflammation throughout the body, that lot of the ingredients that make up the the Standard American Diet (S.A.D.) cause inflammation,* and that each person will react to foods in different ways.*

For me personally, the foods, liquids and medications I was consuming (and had been consuming for years) were causing inflammation and a handful of other reactions. How did I know? I could feel it. But now we had the tests to prove it.

We started to understand some of the underlying reasons for my symptoms and I finally felt like I was in good hands. Dr. H, Al and Sal made up my dream team, each focusing on a different area that needed support. Together, we concocted a recipe for recovery to treat my “lupus”: an anti-inflammatory diet, supportive natural supplements and lifestyle changes to help minimize the stress that was directly affecting the functionality of my body.

The change of diet helped immediately. To start, I removed gluten, grain, dairy, eggs, sugar, nightshades, caffeine and any/all things processed (except for that one time I had a bag of Cool Ranch Doritos…the bag said they were gluten-free, ok?! Gluten-free, yes. Dairy/Processed, absolutely). There were also a list of foods and supplements I added to my diet to help correct the vitamin and mineral deficiencies.* Within a couple of days I felt more energized, less bloated and swollen and the brain fog started to lift. The positive response was so encouraging, I didn’t even miss the foods I had said goodbye to!*

My biggest trigger at the time though was stress. My cortisol levels were off the charts (literally, the line on my test results almost ran off the chart).

At the time, I was the Director of Operations at a public relations agency in the city. I had been with the company since (almost) the beginning and was so proud of what we had built. Leaving the company and my co-workers, turned dear friends, was something I was dreading. But I knew in my gut (pun intended ;) staying there was not in the cards for me and my future. My flare ups were becoming more angry and frequent and I was spending more time out of the office sick than in the office. My flares were my body’s defense mechanism to get to me to slow down. March 2015 I left the agency — it was the biggest sacrifice I had made for my health yet.

Through working with Sal and feeling the positive changes my diet had on my health, I started to develop a passion for using food as medicine.*

(Disclaimer: The same disclaimer as mentioned above can be applied here. Both NC’s and RD’s have strengths for different reasons. My opinions are based on personal experience — take them or leave them :)

Nutritional Consultants (NC) are different from Registered Dietitians (RD), which is what you likely think of when you think of a nutritionist.

RD’s are supported by the U.S. government because the material is produced and funded by them. They’re encouraged to use tools like MyPlate (the updated version of the Food Pyramid) to guide their practice and while MyPlate covers (most) of the important food groups, it tends to focus more on quantity of food verses quality.*

On the other hand, NC’s like Sal use tools like the Eating for Health model to guide their practice. Similar to functional medicine and naturopathy, NC’s are trained to view each client individually and holistically. They focus less on calorie counting and more on the quality and nutritional value of food.*

This concept really clicked with me, especially after my years of (poor) experience with dietitians, nutritionists and residential treatment for an eating disorder in college.* I was also moved by the idea of helping people heal — I couldn’t wait to translate my positive experience into helping others. So, in March 2015 I registered myself at Bauman College in Berkeley, CA and started a Nutritional Consultant program and a brand new career.*

I was to use the next eighteen months to focus on school and my health. I needed rest and I needed to turn down my “go go go” lifestyle, but that concept took me awhile to put into practice. Living in the most expensive city in the country and paying for all medically related expenses out of pocket* didn’t help. When I ended my job at the public relations agency in March, my mindset went immediately to, “how am I going to make money?” So naturally, I took on three jobs (insert picture of me shooting myself in the foot). About three months into it, I got a terrible flareup (shocker) and was forced to quit two of the jobs, which put me right back to where I should have been, resting and focusing on school.

The one positive that came out of that time was an introduction that has since changed my life. I was working as a manager at a yoga studio, where one of the owners knew I had lupus and had been concerned after hearing about my flares. She came to me one morning in August and said she had a friend she wanted to introduce me to. Her friend was recovering from something called chronic lyme disease after being misdiagnosed with lupus* over twenty years ago! Two years ago she had found out it was actually lyme and she had been receiving treatment ever since.

Admittedly, I was hesitant, almost stubborn at first. All I knew about lyme disease was that it had something to do with ticks. I was certain my pain and suffering was not caused by a tick…I didn’t even remember getting bit.* But after our conversation I was intrigued, and what follows is the start of yet another chapter in my story…

To be continued in Part III.