Taking Dystonia One Day
At A Time
At A Time
Who Is Silas?
Silas Courson is my partner in crime, best friend, cab driver, hand holder, best friend, hubby, daddy to our animals, nurse, secret keeper, housekeeper, big project home to-do hammer and nail holder, my audience,sounding board,Yahtzee partner,my rock, and even more than I can list.
Having a chronic illness, especially with chronic pain, means everyone close to you is touched by it as well. I have at least boo-hoo why me!! meltdowns at least 4 times a year and if we are lucky he has his WHY AMY !!! NO MORE SUFFERING!! meltdowns but not at the same time.
We met before I had major symptoms and has been here for the whole journey. It still changes everyday. Dystonia and pain tries to pack it's biggest punch on days we just want to watch a movie and laugh or just run to a fun craft store- together we try to remember to keep ourselves in check and when we get frustrated, not snip at each other because that means dystonia wins.
We try to roll with it and do all we can to keep up communication so that we are always on the same page. When it is TOO MUCH we have "time outs" and try to not let dystonia take every minute of our lives.
The hard times are when we both have WHY Me/WHY AMY meltdowns, or worse, if anything outside of our bubble goes wonky (Like recently losing two pets, job weirdness for him, etc) that's the toughest times. We have almost gotten the dystonia, medication changes, and pain communication lines perfected but one more thing and we lose it. This is the life of living with a chronic illness and how frustrating it can be, for me to want to be better to do more fun things with Silas and for him to want to do anything to make my life easier.
We both blog when we can (link above) and as some of you know, we have been putting everything on youtube since before I was diagnosed which has turned us into the advocates we are today.
NO ONE deserves this disorder and one day there will be a cure, until then we will share our lives and thoughts to hopefully help others out there:). Here's a picture from our honeymoon, pre-10 medications and 3 machines:)
Having a chronic illness, especially with chronic pain, means everyone close to you is touched by it as well. I have at least boo-hoo why me!! meltdowns at least 4 times a year and if we are lucky he has his WHY AMY !!! NO MORE SUFFERING!! meltdowns but not at the same time.
We met before I had major symptoms and has been here for the whole journey. It still changes everyday. Dystonia and pain tries to pack it's biggest punch on days we just want to watch a movie and laugh or just run to a fun craft store- together we try to remember to keep ourselves in check and when we get frustrated, not snip at each other because that means dystonia wins.
We try to roll with it and do all we can to keep up communication so that we are always on the same page. When it is TOO MUCH we have "time outs" and try to not let dystonia take every minute of our lives.
The hard times are when we both have WHY Me/WHY AMY meltdowns, or worse, if anything outside of our bubble goes wonky (Like recently losing two pets, job weirdness for him, etc) that's the toughest times. We have almost gotten the dystonia, medication changes, and pain communication lines perfected but one more thing and we lose it. This is the life of living with a chronic illness and how frustrating it can be, for me to want to be better to do more fun things with Silas and for him to want to do anything to make my life easier.
We both blog when we can (link above) and as some of you know, we have been putting everything on youtube since before I was diagnosed which has turned us into the advocates we are today.
NO ONE deserves this disorder and one day there will be a cure, until then we will share our lives and thoughts to hopefully help others out there:). Here's a picture from our honeymoon, pre-10 medications and 3 machines:)
