I warned you I was coming. I gave you notice. And you persisted. I spent an inordinate amount of time being the well-mannered pet. I behaved. I sat. I stayed. I complied. Despite the pain of the leash, I softened my edges in exchange for permission. And now, as the fire pulsates in my chest … More Taking it Out in Trade
Balancing the burden of illness in a family. Everyone is pulling the weight. … More This Just Feels Heavy.
So, I have been doing this thing. You know, where, you trade one protective instinct for another. I mean, let’s be honest, I can downplay it, and give you all the reasons, but the reality is, I have been approaching the world weapons drawn. Over the past year, a lot has been blamed on my … More I’m a Bit Prickly.
To be entirely honest, I already processed. I did it quietly. Inside. Where no one was looking. I am accustomed to that. I say that, not to be critical, not to be negative, and please understand, I have no intention of it landing that way. I understand that is the nature of invisible illness. I … More Processing . . .
Describing invisible chronic illness to someone who does not deal with it is fairly difficult. There is a limit to their understanding and often to their willingness to engage in the conversation. It is understandable. No one wants to be party to another person’s misery. And as such, we often find comfort with other people … More This Girl, Endures
I had a seizure today. You know you live with a chronic illness when you begin finding humor in episodes. I sat across from my husband this morning having coffee. The kids were still sleeping and we were enjoying a little quiet. Out of nowhere, I spit a mouthful of coffee all over him, and … More Surprise! #EDS #Dysautonomia
I am starting physical rehabilitation soon, and I am grateful. The geneticist has ordered a DEXA to check my bone density and referred me to a doctor to help me build strength and develop a program to help my lax joints and instability. For the first time in three years, I feel like I am … More Clear the Doorway
I want so badly to say things are improving, and I want to be able to be honest about it. I am venting my frustrations and anxieties here because I just can’t burden another person with sitting through my list of complaints. I have found that a large part of maintaining relationships is pretending to … More No Way Out
I am talking to myself today. But I have decided I will share this with my fellow #zebras. I recently went back to work, and suggested I might chronicle how this went for someone struggling with Ehlers-Danlos and Dysautonomia. I would suggest first and foremost that if I did not have the understanding and patient … More Do What You Can Do
This is how I wish to greet the world each morning. Painted up in my game face, I look comfortable, even. I haven’t written in a while. And I am bubbling up. There is this feeling in the pit of my stomach, and it is like a ball of fire. It burns, and I can … More Game Face. Shame Face.
Peerspectives 