Like many people with chronic conditions, I suffer from a plethora of symptoms and named diagnoses. My journey to chronic disease was not an incremental experience. Instead, I seemed to plummet from a life of general adventure and good health to pain and suffering in 24 hours. Years after that peculiar day, I am finally able to look back on my lifetime health and see small signs and symptoms of what unraveled. Some things still don’t add up. Other things are out-of-the-blue medical problems that baffle everyone. Overall, only time and a careful rewinding of my journey has given me some sense of physical stability and assurance of my sanity.
Being an online sleuth and tired researcher lead to many of my diagnoses. I had to be the one to take control of my medical journey (a difficult task at best when you are sick). It is beyond frustrating. Waiting for doctors to catch up to my conclusions and being discerning enough to understand that my self-educated medical knowledge pales in comparison to those who have devoted their lives to biology. Being cautious yet steadfast explaining my knowledge of my own body usually feels as successful as yelling at a wall, but I do it. Over and over again.
My hope is that some of the millions of people living with chronic illnesses will find this place and experience moments of understanding, frustration, and levity. We suffer alone enough. I’m here. Let’s take a breath together and address the decisions the world is making for us, not with us. Let’s talk about how we survive. Why we survive. Even if no one reads this, I’ll be here as frequently and for as long as possible.
Spoons, zebras, and ladders welcome.