It’s a little quiet here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome but for good reasons. Over the past few months with the holidays (and recovery from my seasonal depression), the house-search, and all my medical appointments my spoons are lacking a great deal. So goes chronic life. I am dealing. Still, it… Read More Chronic Life with EDS Update: Accessible Housing, A Gillion Medical Tests and More
The neuropsychologist looked at me with all the typical body language indicating sympathy and said (paraphrased): “Everyone one has a plate in life. Your plate is overflowing. As your plate’s contents grew, some things fell off. We will look at those things.” It took me roughly 24 hours to process what exactly this meant. I… Read More Chronic Illness Life with Ehlers-Danlos Syndrome: Neuropsychology Take One
The holidays a rough on many of us living with chronic disease and/or disabilities for a number of reasons, each unique and valid.
It’s hard not to let the weight of the season set us back a peg or five. Positive coping tactics are crucial to reducing stress and the risk meter for holiday flares.
The Twelve Days of Chronic Illness Christmas is my way of coping with my chronic diseases and disabilities during a time of the year when I am already prone to increased depression.What is our struggle worth if we cannot laugh together about it every now and again?
Please enjoy my rendition of this holiday favorite and may you have a restorative holiday season filled with tons of extra spoons along the whole holly jolly way!… Read More The Twelve Days of Chronic Illness Christmas
The year twenty-sixteen is coming to a close and I cannot believe how much has changed since this time last year! Chronic Illness Life with Ehlers-Danlos Syndrome peaks and troughs constantly, often without warning. Since getting my official diagnosis, research on how to best manage my FINALLY named disease helps and I’m adjusting as more things… Read More My Chronic Illness Life with Ehlers-Danlos Syndrome: A Personal Health and Life Update
I am one of the cursed ones, doomed to live life with chronic, progressive musculoskeletal pain. Whether it’s my muscles, joints, bones, ligaments or tendons acting up, my diagnosis of Ehlers-Danlos Syndrome plays out painful effects throughout any one or all of these system components. Finding a pain management strategy to improve my quality of life is an Art of… Read More Chronic Pain Toolkit: 6 Tools to Improve the Quality of That Chronically Painful Life
Ehlers-Danlos Syndrome is an inheritable, genetic disease affecting the quality of collagen in the body. Collagen is one of the most abundant proteins within the body, making up the tissue structures of ALL body systems. The faulty collagen produced in the body of the Medical Zebra ranges in effects from benign hypermobility to severe musculoskeletal debilitation.… Read More My Ehlers-Danlos Syndrome Medical History
My diagnosis of Ehlers-Danlos Syndrome (EDS) took a very long or short time depending on the perspective. While all my signs and symptoms tell the tale, my ability to persevere in spite of great challenges along with the ignorance of my local medical community resulted in a 16-year battle, at times desperately seeking a reason behind all the… Read More Ehlers-Danlos Syndrome: My Journey to Genetics