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Stephanie Mouw

Locust Valley, NY
  • Stephanie Mouw in the photo 1

I came to HSS in April of 2015 after a winter of seeing numerous specialists here on Long Island for symptoms ranging from severe facial flushing, extreme fatigue, Raynaud's and becoming too easily winded and breathless with mild exertion despite keeping very physically fit. I began seeing Dr. Alana Levine, then a rheumatologist at HSS, and working with Priscilla Toral through HSS’s LupusLine® program. Initially diagnosed with Lupus, later revised to Undifferentiated Connective Tissue Disease, I finally had some idea of what I was dealing with! I had extreme photosensitivity and spent much of that first summer in darkened rooms, venturing out only when the sun was down. I began waking at 4:00am so I could go out for a jog or walk. Exposure to sunlight, or even fluorescent meant enduring sleepless nights with my face on fire, applying ice packs and cold compresses all night to calm the incessant burning. The fatigue, at times crushing, made working difficult and occasionally impossible. I was desperate for help physically and emotionally, and at HSS I received both.

Dr. Levine began me on a medication regimen and monitored me every few months. I enrolled in LupusLine® through HSS’s Department of Social Work and began regular phone sessions with Priscilla Toral. Priscilla was then and continues to be a tremendous source of help, comfort and guidance. I've always been very active physically and love the outdoors but now the sun had become my enemy and I needed to avoid it. My husband and I are avid kayakers, I jog and love to take long walks in nature. Priscilla helped me to navigate the depression and fear I experienced as a result of not being able to safely engage in those activities I so enjoyed. Those long days spent indoors gave me time to think about how I might “retool my life”. I began taking art classes, and for those 3 hours in class I was focused, in the “zone”, released from thoughts of illness and fear. Art became one of many tools I acquired to help manage living with what I now realized was a chronic illness. I continued to work with Priscilla who has encouraged me to: journal; keep focused on the things I can do rather than on those that I could no longer do; strive to maintain a positive outlook so as to avoid falling into the traps of self-pity and fear; seek social support; pursue an active lifestyle with some modifications (I found wearing a face mask enabled me to go kayaking); and continue pursuing my drawing and painting classes. I had to cut back a bit on work hours in order to manage stress and have some time for self-care. I'm so grateful to Priscilla and Dr. Levine for helping me get to a place physically and emotionally where I'm able to manage and accept living with a chronic illness, and for being there for me in times of distress.

I recently had a few bone fractures - temporary setbacks. I've learned that “this too shall pass” no matter what the difficulty. I know what to do when symptoms flare up, trusting that I'll be okay. I've also learned the importance of connection - to my team of medical professionals, to my social support network of friends, to my clients with whom I work, to my wonderful husband, to my art, and to my Higher Power. I'm grateful to HSS for addressing not just my physical illness but the whole person so that I'm able to live well, even thrive, in spite of having a chronic illness. Since Dr. Levine’s transition from HSS I've found a great rheumatologist here on Long Island. I also continue to work with Priscilla Toral in the LupusLine® program even though I'm no longer a patient at HSS. For that I'm very grateful!