Sandy Johnson, Mast Cell Patient

I live with chronic and invisible illness…a rare, potentially life-threatening, disease. And I live life to the full. I’m also the mother of two chronically ill teenage children and the wife to one amazing caregiver! Medical talk and paraphernalia is a way of life around our home. Yet illness is not the center of our home, because we are learning to become uncommonly brave.

This is my personal blog, designed to combine optimistic realism and experience with solid research and inspiration. This is my humble way of contributing something of value to those who make up the chronic illness, rare illness, undiagnosed illness, invisible illness and chronic pain community.

Whether you’re chronically ill, are the parent of a chronically ill child or act as a caregiver to someone chronically ill, then this space is for you. Over time I trust we will interact and share the best ideas for facing illness with uncommon strength and courage.

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MY BIOGRAPHY

For thirty years, I chased a medical diagnosis. No one knew quite what to make of a woman with seemingly random symptoms that migrated from one bodily system to another. How could flushing, headaches, itching skin, nausea, heartburn, GI distress, breathing difficulties, internal pain, full body pain and chest pain possibly be related…especially when they don’t occur all at once. But these things are related for me. They’re symptoms of Mast Cell Disease, an illness in which my mast cells act badly.

Who knows, in twenty years perhaps every physician will understand and be aware of Mast Cell Activation Disorder. At present, however, most physicians have not heard of this rare illness or have an understanding of how to treat it. For me, it has been both chronic and progressive. Each year has been a bit more difficult than the one prior. My care team at the Mayo Clinic, though, is excellent, and I am grateful for their expertise. In addition, I’m so thankful for the ongoing work of The Mastocytosis Society and for each and every member of the masto community who has helped me understand how to have the best life possible living as a mast cell patient.

My two teenage children have a combination of illnesses, including Ehlers Danlos Syndrome Hyper-mobility Type, Postural Orthostatic Tachycardia Syndrome (P.O.T.S.), Traumatic Brain Injury, ADHD, Allergies and Asthma as well as Prenatal Drug Exposure (birth parent). They both attend school regularly (one with an IEP and one with a 504 plan) as well as participate in extra-curricular activities of their (and their doctor’s) choosing. We are also thankful for the pediatric services of the Mayo Clinic, and we’d like to say a huge shout-out to the staff, donors and volunteers of the Ronald McDonald House in Rochester, MN for their work serving families like ours over the years!

As far as professionally, I have worked in the contemporary Christian church world for more than twenty years. I have undergraduate degrees in Bible and in English from Northwestern College (now known as the University of Northwestern), and a graduate degree in Organizational Leadership from Regent University. I’ve worked for Willow Creek Community Church, Kensington Church, Prairie Lakes Church and Pulpit Rock Church over the past many years. I love God, and I love leadership.

DISCLAIMER

We’re not doctors! Information posted here should not be considered medical advice. It does not replace consultation with physicians or specialists. While we may provide research, advice and encouragement, you must make your own well-informed choices. Links to other sites are provided as a courtesy, but do not constitute full endorsement of those sites by UncommonlyBrave.com or me; we are not responsible for their content.

Additionally, opinions expressed here do not necessarily represent those of current or future employers. I make no representations as to accuracy, completeness, currentness, suitability, or validity of any information on this blog and will not be liable for any errors, omissions, or delays in this information or any losses, injuries or damages arising from its use.