For this month’s Sava Wellness Community interview series, I have the pleasure of interviewing Laurely (she/her) from the US. Laurely is passionate about bringing awareness to endometriosis and advocating for yourself by finding the right doctors. She has found functional medicine to be essential to her healing and hopes that the healing continues. Laurely describes herself as a person who is chronically ill. Laurely “chose this description because my existence is not defined by my illnesses. It’s helpful to remember that I am not my conditions. I still have a lot to offer as a person.”

Hello Laurely! It is awesome to talk with you today. Could you please tell us a little about yourself? 

I have a very close family including my fur baby, Okey. We love to watch tv together, including my fur baby. Personally, I like to read, do qigong and yoga, crochet, disneybound, draw, listen to calming music and watch Chinese dramas. Since the pandemic, I started working from home as a virtual assistant (billing and scheduling), English teacher and tutor. It can be a hectic schedule, but improving one’s health can be very expensive. And, I really do love the mixture of what I’m able to do from home!

Do you have a diagnosis for your symptoms? Can you tell us what it is and describe what that means for you? How long did it take for you to get a diagnosis?

I’ve been diagnosed with endometriosis, histamine issues with foods, and mold toxicity. I’ve had endo for about 20 years and struggled in silence for the first batch of years thinking the pain I was feeling was just the price of being a woman with a cycle. It wasn’t a long diagnosis process for endo because the first doctor I actually told about it labeled it immediately. However, she said I had only 2 options: surgery or birth control. I was young and deathly scared of the word surgery, so I started taking birth control. That worked for about a year, but I developed PVC (premature ventricular contractions) at the same time, an effect, I learned, from the heightened chemical levels in my body, probably affected by taking the birth control. And, the pains came tumbling back with the alternative birth control option. It wasn’t until I started seeking out naturopathic and functional medicine doctors that we discovered just a year ago that, in addition to endometriosis, my body was highly toxic with a particular type of mold. My toxicity level was almost off the charts.

The histamine intolerance was discovered by chance through a Zoom call with a friend about 2 years ago. This friend has her own health struggles and encouraged me to try a low histamine diet and seeing if it helped. I was amazed at the lowered level of pain I felt after being on the diet for a few months. It didn’t get rid of the pains, but the difference was huge. At some point, I had developed an issue with histamine in foods and it’s still a problem that affects my eating habits.

When did you first realize that you had chronic illness and how has your journey been since then? 

When I was throwing up after eating certain foods on my period and my pains were becoming unbearable I knew something was up. When you can’t get off the couch to join a normal family outing, there’s a problem. That eventually developed into intense leg pressure, back pain that felt like I was breaking in half, deep cramping, persistent nausea and becoming couch bound in the fetal position for 24-72 hours just trying to breathe. These got so bad my family wanted to take me to the hospital each time my cycle came on. I was barely able to eat anything or keep any food I did eat down. This meant I lost a lot of weight after 3 days of barely eating if at all. This level of weakness is something no one wants to experience or see someone else suffering from, especially when there are no answers or guidance through it.

How has your experiences of the world changed since your symptoms started? 

Now, my entire routine from skincare to hair care to food is as organic and clean as possible and as low in histamine as I can manage. Seeing the foods that I used to eat still entices me to want to eat them, but at the same time, I see the issues with the foods that are eaten in America. I’ve always heard that America’s food is one of the worst in the world, but I only now understand just how terrible the amount of  chemicals, preservatives, pesticides and carcinogenic products in our foods are. And, I’ve learned how much damage it can all do to our bodies. While food can bring us joy, at the end of the day, our bodies need its nutrients to survive. All we can do is research what we can and make the best choices we can with what’s accessible. It’s much more expensive in the US to get away from nutrient poor foods, but it can become 100% necessary to survival for some of us.

Which of your symptoms do you find the most debilitating and why?

I’d have to say the unexplained, searing pain that runs throughout the lower half of my body is the most debilitating. On my worst of the worst days, I can’t sit up, think, focus or talk. I was taking days off from work each time my cycle came around because it was impossible to be polite around others and get work done in the office properly. One time I made it to work and was sent home a few hours later when people started realizing how terrible I felt. I absolutely hate cancelling on people or taking off from work. But, when the pain would hit, I’d have no choice. And, no doctor can tell me why I feel the pain so intensely and in the places I feel it. Endometriosis in itself is unexplained in origin and reason. So, the pain is extremely hard to rationalize to myself and explain to others. Unless you have it, you can’t understand it. 

Can you describe what a bad day symptom-wise looks like to you?

Thankfully, since I’ve started working with my new functional medicine doctor and she discovered the mold toxicity, my worst days are (hopefully) behind me. But, I still have bad days despite the work we’ve done so far. A bad day has already started with nausea and ovary pain/pressure the days leading up to my cycle. On the day my cycle starts, the pain in my hip and abdomen kicks into gear, and I know I need to situate my work station to my bed, or a comfy, inclined chair. Usually the first few hours are characterized by the pain slowly increasing, nausea stopping me from eating anything else and my leg beginning to weaken. Sometimes a headache follows and I end up fighting sleep the rest of the day. If the pain increases into the night, it’s a sleepless and lonely night just waiting for the worst of it to pass. On these days, I’m not very productive and tend to isolate away from friends and family. My mood during these times is not very good either. There’s just so much going on inside that thinking clearly is beyond my ability and my body goes into survival mode.

When you have a good symptom day, what do you like to do?

This is kind of a little secret of mine, but if I have a really good cycle, I reward myself with vegan marshmallows or chocolate that’s a little less than 85% dark. I’d like to say that I go out and do something physical, but just sitting, reading, or crocheting finally without pain and finally being able to eat becomes so beautiful to me. Match that with a yummy bag of vegan marshmallows, and I’m a happy camper.

What has been the most helpful for you as you have gone through this journey? Is there anything you would like people to know about your chronic illness or chronic illness in general?

The most helpful thing in my journey has been the internal and external motivation from family and friends to find the right doctor for me. I have had many people along the way judge me for not going to hospital or taking conventional medicine or paying all of this money into my health protocol. But, I tuned those critics out and continued in my search. If someone comes to me with an agenda to push conventional medicine on me and make me feel bad, I tell myself I’ve taken the pills, I’ve had the surgery and nothing worked. My health is my responsibility. I will push through as much as I can to continue to see improvement in my health and be surrounded by a medical team and support system who listens to and validates every discomfort or odd sensation I feel. Sometimes, you have to be your own best advocate and keep fighting. There are no ultimate answers in this world for many of the issues we face. I’m not even looking for a life free of all pain. But, if there’s a way for me to live a life of less pain and more happiness around food and activities, I will continue toward it in any way I can.

Thank you Laurely! 

If you have followed along with the Sava Wellness Community interview series, you know that at the end of every interview the interviewees are asked what they would like to promote. Laurely has chosen to promote @endowhat because “it’s relatable, educational and so validating for anyone affected by Endometriosis directly or indirectly.” So please go and follow along to learn more about Endometriosis.

In addition to Laurely’s promotion piece, I (Sarah), would like to also promote that Laurely has an awesome gift box business that contain books, accessories, art, and crochet pieces called @tinkermadegifts and her profile that showcases her fun disneybounds is @thecurlytink (both on Instagram and her business Etsy is here). Please make sure to go and follow along! (And don’t worry, I asked for permission to promote these as well.)