When we first crossed paths with Marisa, we were immediately captivated by her strength, perseverance and grace. Since experiencing a life-altering event at 23 – the catalyst for her most severe lupus symptoms and ultimate diagnosis – Marisa has channeled her personal challenge into supporting, educating and empowering others through advocacy work and her online community, LupusChick. It’s an honour to be a part of Marisa’s daily pain treatment and self care. Learn more about her journey and what’s in store for LupusChick’s next chapter!
Can you tell us a bit about your personal and professional story?
I am an author, national speaker, former journalist and Mrs. New York 2015, and the founder of LupusChick.com, a NY non-profit and social community that reaches about 400k people per month. I was diagnosed at the age of 23, shortly after being hit by a drunk driver as a pedestrian. As many autoimmune diseases are diagnosed after specific triggers, the physical trauma to my body during that event is believed to be what brought my symptoms out in full force. These past 20 years have been quite a journey, but I am grateful to still be here and to be able to help other people by sharing my story.
What is the LupusChick community all about? How did it come to be?
LupusChick was born out of a need I experienced myself 20 ago when I was diagnosed with the disease, and from what I was seeing in those around me who were also living with it. Back then your information came from a few pamphlets at the doctor’s office and 1 or 2 books in the local library. But then the Internet became more accessible and something called blogging began to happen. A journalist by trade, I decided to create a blog, based on the old-school idea of pen-pals by mail, and slowly a community was born. We offer resources, support, education, classes and even give away college stipends to help people in school – in fact, we just awarded our tenth stipend!
What do you love most about what you do?
I’ve always loved helping people, ever since I was a child. Which is why I went to college to be a nurse. That goal didn’t go as planned because of my health but now I get to help people in another way. And the support goes both ways – anytime I am having a rough day, I get an email or a FB message from someone telling me how LupusChick changed their life either through information, support, or direction for potential testing or medication options. To be able to help someone by sharing your story or knowledge, I feel is one of the greatest gifts we can give other people, and LupusChick offers an opportunity for this every single day.
How do you get ready for the day?
When I first wake up, I typically listen to a motivational video or read a devo before even getting out of bed. Then I move on to walking my dog, and making a hot cup of tea and an anti-inflammation shake. But before I really get into the full swing of the day, I sit with myself in silence for a few and do a check of how my body is feeling and where my headspace is at – is there pain, tightness, anxiety, fatigue – whatever I am feeling, I try to start there with something to alleviate it whether it is stretching, a meditation session (I use the Headspace app), some yoga, etc. I feel this builds a good foundation before I just rush into a busy day.
Let’s talk about your experience with pain. How did your pain start?
Honestly, I have had pain since I was about 8 years old. My mom and I were completely unaware that I most likely had lupus back then (the symptoms were all showing) so it got brushed off as “growing pains.” Then, in my 20s, after being hit by the drunk driver, my body never fully recovered and my pain got worse. Add on years of flares and decades of steroids, and inflammation that comes with lupus and pain is a common thing in my life. If I get a day or two each week that is pain free, it is cause for celebration! I try to have the most fun on those days!
What is your treatment plan for pain?
I have a variety of things I use for pain. CBD, medical marijuana, anti-inflammatory supplements, muscle balms, magnesium therapies, pain relievers if necessary, mindfulness/meditation sessions, ice packs, massage and acupuncture, and also my Thermotex Far Infrared Heating Platinum unit.
How has Thermotex supported you with your pain?
Thermotex really changed things for me. In fact, I use my unit so much, I literally carry it from room to room as I move about the house and it is usually the first thing in my suitcase when I travel. I used to use heating pads and hot water bottles a lot but I can’t say I had any major relief from either of those options. I can tell with the Thermotex that the heat is getting in deeper and my muscles and the tightness feel so much better within 15 minutes or so.
In your opinion, what are some of the benefits of far infrared heat when compared to other treatment options?
With far infrared, you are getting to target the exact areas and help in the healing process by reducing inflammation and increasing circulation to the area. This type of heat also helps relax the muscle and relieve tightness. Regular heating pads just can’t match this because they can’t get as deep as the infrared (which gets 2.36 inches deep!).
What does ‘wellness’ mean to you?
Wellness for me is the totality of the current state of our mind, body and spirit. When one or more of these areas is suffering, you never feel complete and there is always a struggle. Wellness to me is looking at my diet and food choices, how I am fueling my body, resting my body, etc.; my faith life is important and helps keep me balanced and centered; and determining where my headspace is each day, and how I can better love and be more compassionate to my own body has helped me with anxiety and fear – two things I have struggled with a lot since my diagnosis. All of these take constant work and being intentional, and checking in with yourself on a regular basis.
Any final comments? What’s on the horizon for you?
I am so excited to announce my memoir, Chronically Fabulous: Finding Wholeness and Hope Living With Chronic Illness just came out on preorder, and can be found on Amazon or on my publisher’s website, BroadleafBooks.com. It is a memoir/self help guide, and also a cookbook that helps people thrive despite any type of chronic illness, and provides insights and personal stories that will encourage them to live out their purpose even in the midst of a diagnosis.
We were also just featured as Chapter 35 in Lady Gaga’s newest book, CHANNEL KINDNESS, available anywhere books are sold. The LupusChick story is one of 51 stories she chose of people paying it forward with kindness, and we couldn’t be more excited!
We have also completely rebranded LupusChick.com and there are many resources and articles on there for anyone living with a chronic illness. We would love for you to stop by!
To soothe her pain, Marisa uses the Thermotex Platinum Far Infrared Heating Pad.
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The Platinum System is the most studied, popular and versatile far infrared therapeutic device in the industry. Boasting 3 patented heat inserts, the Platinum System provides targeted, safe and effective infrared heat to almost every part of the body.
Engineered to flex and wrap to relieve pain and inflammation with far infrared heat therapy; the Platinum penetrates 10x deeper to increase blood flow in large muscle groups in the body including the upper and lower back, hamstrings, abdomen and arms.