I am 55 years old and for 22 years I have had orthostatic hypotension (OH) in addition to numerous other rare conditions. I have been homebound for those 22 years. When I stand or sit up, I pass out or I have symptoms like dizziness, lightheadedness, nausea, tremors and headaches.
OH is the main symptom of dysautonomia. The “dys” in dysautonomia means “bad” or “broken.” “Autonomia” means the autonomic nervous system. Your autonomic nervous system controls all of your involuntary bodily functions like heart rate and blood pressure, the widening or narrowing of blood vessels, stomach, thyroid and bladder function and more. None of these functions work properly on me. I was diagnosed with dysautonomia and orthostatic intolerance (OI, a subcategory of dysautonomia) in 1989.
Without Caring Voice Coalition I would not be able to receive treatment that I need to sit up long enough to do everyday things like eat at the table.
I got online in search of support in 1997, in the Internet’s early days but found nothing. Desperate to find someone like me, I built likely the first-ever online dysautonomia support group, that I still run today. I have been a voice for those with dysautonomia for two decades. I wrote God Needs Me, the first book written by and about someone with OI. We face challenges going to the bathroom, bathing, sitting, brushing our hair or even trying to see a doctor. I wrote the book lying down in bed on my laptop. In it, I share how people with rare illness aren’t accepted. We lose family and friends. We face life without a cure. Our conditions have little public awareness. Few doctors specialize in them.
Without Caring Voice Coalition (CVC) I would not be able to receive treatment that I need to sit up long enough to do everyday things like eat at the table. It blesses me beyond measure that CVC cares enough to help me and others with OH. I pray nightly that all those with OH will get the help they need.
My condition causes exercise intolerance. When I move too much or exercise, my blood pressure drops and I pass out. So after 22 years I am not only weak, but I have felt locked up in my own house. I truly feel robbed of my best years, from 32 to 54. I can never get those times back—but I can look forward and pray that it will be different with my sweet, 21-month-old, precious granddaughter, Sophia.
My advice for others is: Do not give up. It’s OK to hope in doctors, but sometimes we put all our hope in them. Doctors would not advise me on pool therapy and OH because research is lacking. And while I am not cured yet, I am doing better than I ever dreamed I would be. I will continue to swim for my health, but also to give hope to thousands of other sufferers whom I love and support.
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