Update 032020

All non-essential appointments on hold. This is such a crappy thing for those with chronic illnesses. While our needs might not be urgent at the moment it is so easy for everything to pile up and create a land slide. It is essential to stay in prevention mode.  

Getting problems and symptoms managed is a challenge when the system is running as usual. Now it has become a chronic illness road block. On the one hand, we’re part of those at highest risk and don’t want to be out and about, but on the other hand we don’t want to ignore our medical problems either. 

That specialist appointment you waited 6 months for? Cancelled. It’ll be rescheduled after the crisis and guarantee there will be another 6 month wait. It’s frustrating. 


Grief is a strange thing. It comes at you when you least expect it. You think that you’re ok until you’re suddenly not. As awkward and uncomfortable as these moments can be, they are completely normal and ok. It’s not a sign that you’re unraveling. 

I had to remind myself of that today. I as grocery shopping and there was this little teapot flower pot with a small red flower planted in it. When I saw it I thought to myself that I should buy that for my Grandmother because she would love it. Then reality caught up with me and I was struck with the grief of her death. So, there I was in the grocery store, holding this little pot and crying. 

Continue reading “Grief”


Most people who struggle with chronic illness have also had to face an existential crisis. Most don’t call it this or realize that there is a name for it, but most of us share this experience as we move through our journey of grief. We have to face the world as it is: brutal, raw and unfair. What meaning and purpose can there possibly be in a universe that slays children with leukemia and slowly crushes you beneath the EDS heel?