Our family began a journey in the fall of 2013, when I stared experiencing sporadic and intermittent loss of muscle control in my tongue, mouth and hands. It took a year of tests, trials and errors to find a diagnosis — myasthenia gravis, an incurable autoimmune disease that strikes about 1 in 50,000 people.
After the blood work came back positive in the fall of 2014, my neurologist sent me for a CT scan of the chest to get a look at the thymus. Turns out, not only was I the 1 in 50,000, but I was also one of the 15% of that subset with a tumor on their thymus (a thymoma, as it’s called). Mine was about the size of the end of your thumb, and appeared to be behaving itself. These are almost always benign, but it does mean the thymus has to come out — by sawing the sternum in two and prying back the ribs, just like with open heart surgery.
At the time, I remember saying “doctors say this will give me at least a 50% chance of the myasthenia gravis going into remission within the next five years … and that would be great, because it’s been impacting the two things I do best and spend the most time doing: talking and eating.”
The surgery took place in December 2014, and the recovery went along nicely — for about six weeks. Then the symptoms started to return, with a vengeance.
February 6, 2015, found me in Neuro ICU, unable to swallow and with difficulty speaking. The disease began impacting my lungs and, within days, I was on a ventilator. For 12 days, I lay there in a out of consciousness (mostly out), developing pneumonia that further complicated matters. After I came off the ventilator, I would get better and worse, better and worse, until at last I was transferred to another hospital for an experimental treatment. That team installed a stomach tube so I could at last go home and still get my medication and nutrients. All total, it was two days short of seven weeks of hospitalization. And my dear Michele was by my side for the entire journey.
The year saw another hospitalization, in May, for significant pneumonia. Upon discharge I continued with lots of medications, various IV treatments (some in home, some at an infusion clinic), home health and rehab. Some of this is ongoing.
As business owners, we had to learn to work a different way. As husband and wife, we had to learn to live a different way. There have been challenging times, but we have been blessed by continual improvement.
In a way, this site is part of that improvement. It is therapy, for both of us. Junking together. Creating together. Sharing with others. We hope you enjoy what you find here. It’s an extension of who we are, as we continue down this new path that opened up before us when life took a turn.