Mommy has been battling chronic illness for most of her life and has always secretly struggled to live life actively. Although she was not diagnosed with debilitating conditions until later in adulthood; it was not until after diagnoses, and even after having children, that she realized her lifelong fatigue, and lacking ability to perform motherhood duties, were validated.
At just 24 years old, Mommy was diagnosed with Myasthenia Gravis, a neuromuscular and autoimmune disease. At the time, she had extensive surgery for possible remission and doctors told her to live life as normal as possible. Yet, after surgery, Mommy continued to struggle with debilitating fatigue. So she said no to the obvious, like hikes and jogging, and she slept in as much as possible. This became her way of life and Mommy managed to mask her symptoms for many years.
But then children came. Mommy’s inability to run around caring for her two boys unraveled before her eyes. This is when her fatigue couldn’t be masked anymore, and she struggled with periods of being bedridden. She lost nearly 15 pounds, her hair fell out in clumps and she could feel her own heartbeat in her stomach. When she started to play entire movies for her boys in the car, to allow for “breaks” between errands, she knew she was experiencing something more than just normal “motherhood fatigue”.
At times, diagnoses and treatment were not an easy road. Years after her surgery, and shortly after having children, Mommy began to comprehend that something was wrong. She began to explore the possibility of an underlying issue, possible misdiagnosis, and even incorrect treatment. With the support of her husband and family, she enlisted better doctors, who concluded further diagnoses and better treatment options. It was then, Mommy was diagnosed with Ehlers Danlos, which is a genetic condition affecting the connective tissue in her body. This affects nearly everything from her vascular system, to digestion, ligaments, joints, organs and more. For Mommy, Ehlers Danlos affects these areas, but severely affects her blood vessels, and her body’s inability to sustain and maintain a normal blood pressure. This makes her feel extremely fatigued. Also for Mommy, she was diagnosed with chronic fatigue, which took until recently for doctors to piece together. Although this diagnosis adds to the laundry list of conditions, Mommy’s symptoms are finally validated and targeted treatments now alleviate many of her physical struggles. It is important to note, that even though new treatment has helped, chronic illness still fights to win.
In order to maintain a sense of normalcy, Mommy still says “no” to a lot, carefully spreads her energy across all aspects of her life, and maintains a supportive village to wrangle her active boys. While her village helps alleviate physical limitations, it also allows time for Mommy to venture outside of motherhood, which helps keep her mentally sane. Mommy strongly focuses on periods of rest and recovery from activities, and active days with her friends and family.
When she is not resting or taking care of her family and the home, Mommy dedicates time to volunteering at the local adult and children’s hospitals. Although sometimes exhausting and often times physically demanding, this is where the focus to give back has become an extremely rewarding experience. Working at the same hospital where she is a lifelong patient is key to her mental positivity, perspective and overarching well-being.
Mommy lives in California with her husband, their two young and very spirited boys, and their Labrador “daughter”.