Life with CCHS

A Long-Overdue Life Update!

So many things have happened since my last post in May, 2019! Hand surgery, joining my local Druid Grove, multiple vegan expos as a vendor, R & D for 21 new Freely Vegan products, Covid changing the world and dealing with Covid supply chain interruptions, dealing with the new social isolation, and trying to manage being …

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Which Formulas for Tube Feeding are Vegan?

As some of you already know, I have CCHS and celiac disease. Most people are familiar with celiac, but CCHS (Congenital Central Hypoventilation Syndrome) is rare and not well known. It basically means my brain does not tell my lungs to breathe and I am dependent on mechanical ventilation. I have a tracheostomy and, like …

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Dayton Pagan Pride 2017

Dayton Pagan Pride 2017 was fantastic! The park was beautiful, the event was well-organized, and all the people there were lovely! My mom and I made a lot of treats and set up a booth to represent Vegan Kitchen Magick. This photo shows most of the table: Here you can see some of the treats …

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Life Update – Staying Hopeful in the Midst of Uncertainty

I apologize for not posting for a while. I have been going through a lot medically and emotionally as I try to adjust to a change in my life that I did not expect to face. For those new to Vegan Kitchen Magick, I have something called Congenital Central Hypoventilation Syndrome or CCHS for short. …

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New York City – Part 8

My last two days in New York were mainly filled with doctor’s appointments to be sure that I had recovered enough to drive home. There were a few issues, but they felt they could be managed from home. This photo is at the surgeon’s office: This is Marissa, a friend who also has CCHS! We …

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New York City – Part 7

I spent the first few days after surgery lying in bed recuperating. I did get a couple of blog posts written, but I was in a lot of pain and the medications I was on made it really hard to stay awake! (See Part 1 for the background info, and Part 3 for the day …

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New York City – Part 4

The left side of my neck is very swollen, and I was in quite a lot of pain last night. (See Part 1 and Part 3 for the back story.) So, I called the surgeon this morning to let him know. He said that the left electrode had been very difficult to place, and that …

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New York City – Part 3

My second day in New York was amazing! I will be sharing lots of photos and four vegan restaurant reviews in my next two posts, but I didn’t have time to write them before surgery. (See Part 1 for the background story.) Yesterday I was admitted to the hospital to get new breathing pacers: I …

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New York City – Part 1

I am in New York and will be sharing some exciting news and vegan restaurant reviews in a few days! First, though, I want to share why I am here. I have a rare childhood condition called Congenital Central Hypoventilation Syndrome, or CCHS. This makes me forget to breathe, which is rather inconvenient. So, I …

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