I have always loved a wide range of foods (dairy and gluten free due to allergies). Different flavors, styles and variety from my own cultures and what I have been introduced as part of family and community. When I started to experience the symptoms of the genetic connective tissue disorder I have, food became more difficult.
I have a connective tissue disorder called Ehlers Danlos Syndrome (EDS) that makes most of my joints hypermobile, and causes GI issues and severe chronic pain (among other things). Issues with my jaw have become worse over the 5-7 years, chronic constipation for well over a decade, and more recently, motility disorder of my esophagus that explains the swallowing and nausea issues that started a couple years ago. I wear braces and splints on my fingers, hands and shoulders to support joints that constantly come out of place. My back also dislocates easily and I can’t sit in an upright position for long without causing severe pain, so I use a reclining/tilting power wheelchair for mobility.
What does this have to do with food?
In 2018-2019, I started to develop issues with swallowing and nausea. That, along with the chewing challenges, led me to start making blended soups on a regular basis and keep an eye on Vitamix blenders. In January 2020, my swallowing reached a critical point and I could no longer safely swallow anything not blended or finely minced (much smaller than the size of a grain of rice).
I was in the hospital at the time and the foods that I was given were bland or disgusting. Blended canned soup, scrambled eggs with no flavour, and so on. The alternative was baby foods and there were a couple that weren’t as bad with lots of salt and pepper added.
But as soon as I was out of the hospital, me and my Vitamix went to work to find foods that were easy to eat, nutritious, and delicious. From earlier, my jaw (and only having 3 teeth that touch) meant that I was already conscious of making foods that did not require as much chewing. But I have learned a lot since then!
I started this blog to share recipes, tips, tricks, tools, and adaptations that I have learned. I also welcome you to join me on this journey to explore even more.
My Team
Issues with the joints in my hands, arms and shoulders affect how I am involved in food preparation and what I need set up to independently eat. I use a variety of tools and adapted devices to be involved and eat as independently as possible. One other support I now require to cook and bake is the assistance of another person. I direct the process and love to be heavily involved in selecting, modifying, and experimenting with foods. But it is vital to have a friend or one of my personal support workers who can do the physical tasks.
If you are located in Halifax, NS and are interested in assisting with food prep, please feel free to get in touch!