I have taken a step back from secular work to pursue one of the most challenging yet rewarding job in my life. And that job is full-time care of myself. I join many in the battle for life with Mast Cell Activation Syndrome, Hypermobile Ehlers-Danlos Syndrome & Postural Orthostatic Tachycardia Syndrome (Hyperadrenergic). Along the way, I am also dealing with the negative effects of a traumatic brain injury that left me blind in my right eye as a child, Fibromyalgia, PMDD, Interstitial Cystitis, Dystonia & GI dysmotility.
I am proud to be a face to these conditions and to stand up in the face of adversity in receiving adequate medical care. The accusations and labeling by SOME medical professionals as hypochondriac, intentionally inflicting starvation and symptoms marked as purely psychosomatic conversion disorder makes me prouder to put my face to these conditions. And I say ha! Had I listened, this is who you would have buried! Hi, I am Kate, wife, mother of 2 beautiful children, sister, friend, completed 3 half marathons, accomplished cook, web designer, at one point small business owner, physical trainer and avid dancer. Welcome to my fight. I may be chronically Ill yet I’m chronically powerful.
Dear forest keeper,
If a tree fell in the forest, would anyone hear it? Yes, you would see the birds fly. I was a tree, multiple times I fell, because you didn’t see it you gave me no help. But my branches were broken, my leaves tattered and my roots withered. I got up each time, and held myself high among the other trees. I guess I didn’t scream loud enough. So I said next time I fall, I will scream louder but no again you did not hear me. It couldn’t have happened because you did not hear me. Eventually, I did not stand as tall anymore, my leaves were dry, my roots did not reach as deep. If only you would have looked at the birds then you would have heard a tree fall.Chronically Ill Yet Chronically Powerful
To my “coworkers” who are taking this journey with me my quarterback Dr. Anne Maitland (Immunologist), Dr. Mildred Kwan (Immunologist), Dr. Pizano (Clinical Nutritionist), Dr. Isabelle Brock ( Anesthesiologist EDS Expert), Dr. Atwal (Geneticist), Dr. Hornebuckle (Gynecologist), Dr. Ilene Ruhoy (Neurologist), Dr. Marla Barkoff (Endocrinologist), Dr. Mobarek (Cardiologist), Dr. Bream (Interventional Radiologist), Dr. Lauren Schiff ( Surgeon, MIS) and last but not least my offensive linewoman Dr. Jill Lambert (PCP), thank you for taking this journey with me. Also my gratitude to countless nurses, physical therapist, respiratory therapist, medical assistants & medical students. You all have separated yourself among your peers & stood up advocates for those of us whose conditions are “invisible” to those who refuse to open their heart and look beyond what’s in front of them. You are one of the few who have gone above & beyond. You opened your mind’s eye and saw the obvious. You saw patterns, deviations, and you questioned not the ill but what others try to write off. And I know this hasn’t been easy for you all. I can’t write you story of what you have been through, only you can. But just as you have heard us, we see your hard work. So thank you on behalf of the “Invisibles”.