I am Lori Newcomb, a mother of a very busy three-year-old. Shortly after I turned thirty, I moved to a colder climate, which triggered many symptoms and issues in my body that were out of my control. This led to me visiting many doctors at the University of Michigan and Vanderbilt several times over a year-and-a-half. It was only after a real fight of speaking up and advocating for myself, that I finally received my diagnoses.
I was diagnosed with several conditions including Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome type 3 (EDS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Scoliosis, a rotated pelvis, Vertigo, tremors, Iliotibial Band Syndrome, Tendonitis, Osteoarthritis, and basically a dysfunctional muscle above my kneecap.
In 2007, before I had my diagnoses, I had to have surgery on my abdomen to remove scar tissue. The scar tissue had wrapped around my intestinal tract, and I could not cough, sit down, or laugh because it was so debilitating. The surgeons did exploratory surgery, found and repaired the extent of what was happening in my abdomen, and then asked permission to add what had happened to me to their medical journals at Vanderbilt. They wanted doctors to be able to learn from it, due to this kind of thing happening being so rare.
I also have a history of Ehlers-Danlos Syndrome-Vascular Type in my family. My Dad had an aneurysm in early adulthood. However, due to a lack of records, insurance has denied the genetic testing needed to confirm if I also have the vascular type of EDS.
However, once I had names for what I was diagnosed with, I felt less fear, and I was able to receive more of a management/action plan. I have not had any experience with Ehlers-Danlos Syndrome specialists since it is a multi-systemic condition, so I have had to advocate for myself, research, and find my own protocols to increase my quality of life.
Five Invisible Symptoms
- I experience dislocations and pain everyday throughout my body, and it is mostly prevalent in my hips, shoulders, toes, kneecap, and my jaw. The dislocations vary in pain and can be anywhere from painless to excruciating; especially if I fully dislocate a joint that becomes immobile.
- Irregular heartbeats and chest pain.
- Food allergies due to Mast Cell Activation Syndrome (MCAS).
- Flushing and temperature fluctuations.
- Crippling fatigue.
Four Things That Help Me Manage Pain/Symptoms
- Always learning what my bodily limits are in order to decrease injuries.
- I use Kinesiology tape (KT tape) to stabilize my muscles and joints.
- I also had to learn my new energy input in order to manage my new energy output. I learned this concept from an online ME/CFS teacher named Toby Morrison. This concept among chronic illness patients is also referred to as “The Spoon Theory” written by Christine Miserandino.
- I am on an allergy protocol that has helped me manage my allergies and fatigue.
Three Ways My Life Has Changed
I have had to find tools and management techniques that help…
- Epsom salt and doTERRA pain cream help my symptoms.
- I use a Thera Cane massager regularly to manage my pain.
- I have had to learn how to put my own joints back into place.
Two People Who Inspire Me
- Pastor Lovi Elias.
- Tati Westbrook-an online woman entrepreneur and beauty guru.
Both of these individuals are on YouTube and have been a great comfort to me as my world turned upside down and I became bed bound.
One Thing You Want People to Know
I do not ever give up! I continue fighting for answers, and I maintain the attitude that I will get better. I also hang on tight to my faith that God will provide a way for me to improve enough to be part of society again and return to some form of “normal.” I still cannot work or drive, but I still manage to do the activities that I enjoy doing with my daughter. Being a stay-at-home Mom is the best job in the world.
Also, thank you for taking the time to learn about others and hopefully my story can help provide care and support for other Zebras in the future!
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