My Diagnosis Journey: From Mystery Symptoms to hEDS
The long road to understanding what was happening to my body, and how I finally got answers after years of uncertainty.
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All the medical procedures meant to help me that actually caused me harm
Diagnosis
Medical procedures intended to help can sometimes cause harm, leading to a reevaluation of risks and benefits. Key experiences include severe reactions to contrast dye, unexpected effects from routine medications, and the need for careful consideration of recovery times for dysautonomic conditions. Important questions to ask before procedures include options for non-invasive alternatives, management plans for potential reactions, and personalized recovery expectations. Advocacy for one's health decisions, including seeking second opinions, is crucial.
Understanding POTS: More Than Just Dizziness
Medical
Postural Orthostatic Tachycardia Syndrome (POTS) affects more than just standing, impacting the nervous system, energy levels, cognitive function, and daily life in often invisible ways. This guide offers insights into symptoms, diagnosis, and management strategies from a personal perspective.
My EDS Diagnosis Journey: What I Wish I'd Known
Diagnosis
After seven years and twelve doctors, the author was finally diagnosed with Ehlers-Danlos Syndrome, facing numerous dismissals and challenges in a medical system that often overlooks invisible disabilities, particularly in young women. Key signs included hypermobile joints, unexplained pain, and persistent fatigue.
The 'I' Word: A Neurodivergent Struggle with Facts vs. Feelings
Emotional
Navigating conversations about disability and health requires a balance of facts and empathy. Instead of labeling misconceptions as "ignorant," it's more effective to lead with curiosity, share personal experiences, and validate others' efforts. Gentle phrases can help keep discussions open, while accuracy must be paired with connection to combat misinformation effectively.
One Year Later: Celebrating Progress in My Medical Journey
Diagnosis
After years of searching for answers regarding EDS, POTS, and MCAS, the author reports feeling better due to a consistent mast-cell protocol, improved hydration, and validation from healthcare providers. Key changes include tracking triggers, reducing masking, and experiencing fewer emergency antihistamine days. The author emphasizes the importance of being believed by the care team and outlines next steps, including follow-ups with specialists and ongoing therapy. Progress, even if small, is celebrated as meaningful.
"Alone we can do so little; together we can do so much"– Helen Keller
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