Despite numerous health challenges, I try to be the change I want to see
I try to ground myself in what I can do to promote peace and harmony
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As a person of faith, I was excited to learn that June 21 is not only Father’s Day, but also World Peace and Prayer Day. I am a huge proponent of peace, love, and prayer. Whether you see prayer as personal meditation, corporate affirmation, or just communion with greater consciousness, I am all for it!
As someone living with rare disease, I’ve had many emotional ups and downs with my health roller coaster. My first diagnosis was Lyme disease in 2005, which put me out of commission for two years with treatment and recovery. But I still had arthritis and other lingering symptoms. In 2015, I was diagnosed with Ehlers-Danlos syndrome. Since then, I’ve added quite the alphabet soup to my health repertoire, including mast cell activation syndrome, irritable bowel syndrome, autism spectrum disorder, long COVID-19, calcium pyrophosphate dihydrate deposition disease, hereditary angioedema (HAE), chronic inflammatory demyelinating polyneuropathy, and more.
The most challenging diagnosis for our family was our adopted daughter Leah’s HAE, which was a long journey. Believe me, with her multiple life-threatening trips to the emergency room and various surgeries during those years, my faith was challenged, and I did a great deal of praying.
I’m still praying these days, given my own health challenges and Leah’s rare disease journey, which now includes Charcot-Marie-Tooth disease. We are part of an interfaith prayer circle that has brought us much comfort and outreach. Recently, I was able to discuss Bionews, the parent company of this website, with other group members who are facing possible rare diagnoses.
Our fellowship is part of an international multifaith online organization with members from many countries. With everything happening on the planet these days, world peace is an overwhelming topic of discussion and prayer. There is so much turmoil that it can seem overwhelming to comprehend the magnitude of it all.
In the midst of everything, I try to ground myself in what I actually can do to promote peace and harmony in my own little corner of the world. I try to think of being part of the change I want to see. Given my physical limitations, that may not be much right now, but there are still things I can do.
In my home, I’m a caregiver for my family and an involved grandparent who helps with childcare when I can. In our neighborhood, I get to know my neighbors and help with local events. In our town, my husband volunteers with outreach in the greater community. We attend area and statewide events supporting causes we believe in. We also donate not only time but also funds to charitable organizations. And overall, we continue to pray.
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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