I started my new job at Anabaptist Disability Network on January 5th. It has not been as smooth as we were expecting because I have increased pain in my shoulder, and it is temporarily stopping me from what I originally was supposed to be doing. They have been great about understanding that this is out of my control. Temporarily, I’m doing various projects and focusing on social media. My dystonia is also changing too. It is not getting worse, it is changing. I notice it is more in my arms and shoulders than legs.
I was about to try a new medication for the changes. To give you some perspective, we have not added new medication in twenty years. My neurologist who I love always told us my movements could change so this was somewhat expected. We did some research and found out the new medication could interfere with the COVID-19 vaccine. Out of all the side effects, it interferes with the most important thing in the world right now. The irony is truly beyond me. I have to laugh.
We do not know when I will get vaccinated. All my caregivers are getting vaccinated, but they do not have the people who need care in the same group. This does not make sense. I empathize with the people who are creating the guidelines, that cannot be easy, but this simply does not make sense.
I am sorry I do not have much to share. Life is painfully boring. I did watch the inauguration. What a beautiful thing! Garth Brooks singing Amazing Grace had me in tears. So happy!
I hope you are all well. I think about you every day and I send love!
Hannah!
