My story

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“Someone I loved once gave me a box full of darkness. It took me years to understand that this, too, was a gift.”
― Mary Oliver, Thirst

 

Dedication

My story is for anyone who has been suffering with chronic pain for a long time with no answers or direction. For anyone who has been told by their doctor, “All your labs are normal, nothing is wrong with you.” For anyone who has been told they’re depressed and all their symptoms are simply a manifestation of mental health issues. And most importantly for anyone who feels very alone on their walk through chronic pain, it takes grit and persistence and infinite surrender to trust yourself and what feels like your failing body.

I’ve been there, I’m still very much walking the path to recovery and deeper understanding of what went so wrong in my body many years ago. I hope this story provides reperive for those with chronic pain, I want you to know this journey is never one that is walked alone. I also hope it’s a teaching moment for those who live without daily pain, though many people seem perfectly fine on the outside, the pain they carry can be crippling and sometimes it’s all they can do to smile. Be forgiving and understanding of them.

My story

I remember sitting in astronomy class my senior year of college watching my professor give a riveting lecture on parallax angles. Astronomy wasn’t my major but something about the cosmos drew me in so I ended up randomly taking a couple classes in the subject. This particular day was the fourteenth day in a row I had a headache I couldn’t shake. I had suffered from migraines since middle school but those would last about four hours and go away, these felt different.

As the weeks progressed more bizarre symptoms started cropping up in addition to the headaches. At the end of about 6 weeks here’s what I regularly experiencing:

Headaches, bloating, chronic sinus infection, pressure in my ears, muscle tension, neck pain, back pain, shoulder aches, wrist and elbow pain, red eyes secreting mucus, inability to focus, anxiety, hip, knee and ankle pain, no sex drive, night sweats, vertigo, constant fatigue, stomach pain, rashes on my neck, chest and rib area, insomnia, irregular menstrual cycle, mouth and jaw pain, obsessive-compulsive disorder, imbalanced digestion, hair loss, no fingernail growth, gas and rapid weight loss (I lost about 45 pounds in one month and didn’t have much to lose to begin with).

Of everything I was feeling physically it was the fear and confusion that ended up being the most debilitating. It felt like almost overnight I went from a healthy 21 year old soon-to-be college graduate to a young woman who was quickly falling apart. The most frustrating part was there was no explanation.

I went to campus health first and saw a well-meaning doctor who listened to everything that was happening to me and I was told I had a sinus infection and my neck was sore from leaning over my textbooks. I was given a course of antibiotics and told to work on my stress by loosening up and having more fun with my friends. The antibiotics made me really sick so I was given a different kind in the hopes those would take care of the sinus infection, nothing happened other than my balance being thrown way off.

I went back to him and said something else is going on, it’s not normal to have a headaches for two months straight, have no cycle, lose that much weight and lose my hair in patches. From there, he referred me to a specialist who could help me further investigate the headaches and hormonal irregularities. Every lab she ran came back within normal range and I was given a prescription for an anti-depressant and a pain reliever. I told her I didn’t want those I wanted to understand what was going on, why all this was happening. She told me she didn’t know and the drugs would make me feel better and help me not obsess over these issues.

Why was no one listening? Why didn’t anyone care? I felt there were deeper questions that needed to be asked but everyone I turned to didn’t want to go there.

During my final semester I watched my friends celebrate a wonderful four years of college. They wrapped up their last semesters, went to parties and made plans for the next chapters in their lives. I spent most days in bed or at the library so I didn’t have to be around people, putting on a smile and pretending to be ok and having fun is exhausting when you’re in pain.

I somehow pulled off graduating fall semester and went home to spend time with my family over the holidays. At this point I thought maybe this really was all in my head and I just needed some time off to rest. A couple days before Christmas I was in a grocery story mulling over a tortilla purchase when a random thought popped into my head, “What if I’m gluten intolerant?” I decided it couldn’t hurt to try so I bought the gluten-free tortillas and spent the next couple of days avoiding gluten to see if it made any difference.

To my surprise it made a world of difference, in just two days I was sleeping through the night again and my headaches felt less severe. After a week of gluten-free eating my cycle returned after being absent for 18 months. I was blown away by the impact that cutting out gluten had on my body and mind! Once the gluten went so did the dairy, soy, all grains and legumes. Without knowing it was a thing I ended up eating a Paleo diet.

I started slowly getting better with more dietary modifications but soon realized eating a limited diet like I had gotten to was not sustainable in the long term. I had started reacting to certain paleo foods as well and ended up on a diet of mostly squash, meat and kale. While I felt good when I was eating that way I knew something was still going on that was driving the pain I still experienced on and off and my unending list of food allergies.

For 5 years I continued on a limited paleo diet that helped manage my symptoms but did not ever make them completely go away. I’d still had flares of pain and also mood swings that felt random and unconnected to what was happening in my life at the time. During those 5 years I saw 13 doctors (conventional and alternative) all of whom either were of no help, took wild guesses at treatment, helped me to an extent until I plateaued or told me to stay on my diet and I’d eventually feel better. While they were all well meaning and working within the scope of what they knew, none of them were looking deeping and asking bigger questions about what this could all be connected to.

I still was suffering from all the symptoms I initially had back during my final semester of college just in a less severe way. I would have some good days or weeks and then would have a reaction to a food that I ate or a stressful situation and feel like I was back at square one. All of this changed when I met a wonderful Naturopathic doctor who ran a stool analysis (a test I had yet to do) and she found some lovely little parasites. While parasites aren’t very sexy and are generally considered disgusting, I was thrilled with the news! Finally something, anything I could point to in order to better understand why I still wasn’t feeling totally well. 

I went through two rounds of herbal treatment with her and while I was feeling better (apart from the die-off symptoms) I was still having symptoms that felt far from the symptoms associated with the type of parasite I had. I asked her if there were more tests we could do but wasn’t given much information about further investigation. It was this doctor that got me to a place of feeling well enough to start digging deeper and advocating for exactly what my needs were.

While I continued on my new supplements from the naturopath and finished off the second round of the parasite protocol, I went to a local day-long seminar about adventure and wellness. I was volunteering that day but snuck in for one of the talks provided by two functional doctors, though their talk was about adventure and managing stress (not something I was seeking necessarily) I had this immediate feeling of “I need to see these doctors, they’re my next step in solving this puzzle, I just know it.” After the talk, I found one of them and said (without even introducing myself), “Hi I have parasites but I think something else is going on, could I have your business card?” Very professional, I know. I was so determined at that point and also 100% unapologetic about what my needs where and who I was looking for to help me.

The first appointment turned my world upside down, we discussed possible underlying issues that I didn’t know were in the realm of possibilities. After many blood (DNA, viral, bacterial and nutrients) and stool tests, the conclusion seemed to be leaning toward Lyme disease and the continued parasitic infection. My immune system was also extremely low functioning, it moved slower than a sloth when reacting to anything that came in from the outside world.

With elevated numbers on the Lyme panel, genetics that disable me from detoxing from Lyme and my symptoms, my doctor decided the best path forward would be to treat for Lyme. I jumped in right away to the treatment plan and the first week was awesome, I had boundless energy, I was no longer falling asleep while driving (I know, not good at all) and even sang in the car a couple times. Of course keeping a good thing going at that level of energy when your body is fighting an infection is unrealistic and some uncomfortable die-off reactions set in. Though some days I’ve felt like a fly that just made contact with the windshield of a fast-moving car I knew I was headed in the right direction.

And finally I arrive here, today; I am still undergoing treatment for Lyme (I started February 2018), co-infections and parasites. Not all my days are perfect but I’m starting to have more good days than bad. The most important change of all is in my head, I have hope for the first time in years that I will get better. I trust my body a little bit more each day and the foods I can eat are slowly expanding in variety. The path to healing is not a linear one, I’m headed in a good direction what feels like most of the time but I also twist and turn and sometimes loop back through the same experience multiple times and ultimately all of that is worth it. Having Lyme is worth it, fighting is worth it and caring deeply about not only healing myself but the world is worth it.

In pain, health and everything in between,
Caroline