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Story 48

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

In March 2014, I graduated from the Institute of Integrative Nutrition, where I studied over 100 dietary theories. Shortly there after, I launched my first Health Coaching business, “Gluten-Free G.” As someone who lives with Celiac Disease, I related to the complexities of adapting a gluten free lifestyle. I coached those recently diagnosed with a gluten intolerance or Celiac Disease. I was successful and loved diving into my new nutrition career.

In October 2014, I started noticing swelling in my left pinky joint. It hurt some mornings, but the swelling fluctuated and I never thought much of it. In February 2015, I fell skiing and broke my right wrist. While at the hand specialist, I asked them to take a look at the strange swelling occurring in my left finger. They told me it was swollen from impact and quickly put me in a splint. All along, I had that “gut” feeling that it was not from impact, but rather there was something going on inside my body. I asked for a blood test, curious if I had Rheumatoid Arthritis. I was quickly shot down, and told there was “no way” I had RA, and if I did, that “they wouldn’t put me on the medicine anyway because then I couldn’t get pregnant.” My opinions were dismissed, however the hand specialist agreed to a blood test since it seemed he did not know what else to do.

A few days later, I received a voicemail saying I did indeed have the RA enzymes in my blood work. I was in shock and tears, wondering how at the age of 24 I could have arthritis. I felt even more terrified knowing RA was an autoimmune disorder that had “no cure,” and was something I had to live with “forever.” I reluctantly scheduled an appointment with a rheumatologist, who immediately wanted to put me on an immune suppressant drug that could potentially effect my fertility. I turned down the medication, left in tears, and was determined to heal myself on my own.

I spent the fall and winter of 2014/2015 with a narrow focus. I cut out all sugar, dairy, gluten, caffeine, alcohol, grains, nightshades, you name it. I refused medicine and took only natural supplements. I fiercely trained for the New York Marathon. I ran a minimum of 8 miles a day to deal with stress and sometimes up to 20 miles after a full day of teaching first grade. I forced myself to put away laundry every Sunday night and be in bed by 8:00. I thought I was eating right, exercising right, and being organized in the right way, but in reality I was miserable.

God, The Universe, Love-whatever you want to call it- will have things happen to us until we finally learn what we are supposed to. Even after a broken wrist, an RA diagnosis, and Celiac Disease I still was not in tune with my Divine Self, nor was I slowing down. In January 2015, I visited a homeopathic doctor who had a “feeling” that he needed to test me for Lyme disease. Sure enough, Lyme disease showed up through my screening. This time, I didn’t cry or flinch. I felt numb to yet another “bad thing” happening. A week later, I jumped off a cliff skiing (not as cool as it sounds) and tore my ACL.

A broken wrist, RA, Celiac, and Lyme disease were not all enough to make me stop, slow down, and take better care of myself. At the time, skiing was everything to me. It was what I identified with, it kept me sane, it was a time outside, a time alone, and a time with friends. And now the escape was gone and all I could do was face myself. My surgery and recovery process was nothing glamourous. It was painful, lonely, and I felt like I could not take one more diagnosis. Since my body was in shock from the surgery, my Lyme disease (along with three of the Lyme co-infections) reared their ugly heads.

This time, I had no choice but to slow down. I could not walk for a couple weeks. The way I fell bruised my knee bones so badly I was told I should not run anymore. Running, skiing, moving quickly-all my “escapes” and identities were stripped from me.

It was not an overnight process, and I’m still learning today, but it was during those dark, painful times I had to make a choice. I had to make a choice to heal myself. And the only way to heal myself was to love and accept myself. I accepted my autoimmune diseases. I accepted that I could no longer run. I accepted that I was single at the time. I accepted when I gained some weight before the surgery and loved myself when I lost too much after the surgery. I accepted that I made a mistake to jump off a cliff. And with all that acceptance finally came a pure love of myself that set me on the journey of whole body healing.

In time, my knee got stronger, but I knew I could never go back to my old ways of moving too fast. I finally gave myself permission. Permission that it is ok to go to for a walk instead of a run. Permission to take a nap instead of going to yoga. Permission that it is ok if your laundry is not put away on a Sunday night or if my bed is not made up perfectly.

I’ve learned it all comes down to balance. Today, my ACL is healed, but my finger is not. Lyme continues to show up in my blood-work but I feel I am on the path to healing. I learned how Lyme disease is the “great imitator”-meaning it mimics other autoimmune diseases like RA and MS. It became unclear whether I actually had RA or whether it was solely the Lyme all along mimicking RA in my body. My doctors still are unsure, and I know I will never have a medical answer to whether it is RA or only Lyme. My intuition feels that Lyme is indeed the great imitator, and I do not have RA. I do my best to avoid negatively naming all of these diseases. I find it only gives my ego more power. I feel it is better for me to accept my imperfect health and then let it go! What’s the point in thinking about it all the time or feeling sorry for myself?

My achy joints feel better, but the Lyme disease still lingers.  I’m grateful I have a doctor who treats my Lyme disease. Some days I feel great, and other days my body hurts. I take antibiotics when prescribed, as well as natural supplements to reduce inflammation. Sometimes I have kale for lunch, sometimes I have gluten-free pizza, and sometimes I have both. I believe in the importance of slowing down, taking care of myself, and eating in a way that best supports my body without deprivation. I practice mindfulness which sometimes can be as simple as a deep breath or an act of gratitude. My health is not perfect and neither am I.

Whole body healing is a journey and I am evolving along the way.

Butterflies have been my symbol of hope throughout my whole Lyme journey. The yellow swallowtail always “shows up” and I truly believe it’s a sign of grace guiding me.

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