My infusion started around 2PM and it is 5PM. I’ve had severe headaches with my first two infusions, the headache with the last one being beyond what I could tolerate. We will keep tweaking things each infusion until we figure out which changes result in less severe of a headache. Changes this time: I…… Continue reading IVIG #3 Update Page
Today is Sunday, and I had my second IVIG infusion on Tuesday. As I mentioned in my last post, the plan was for me to take steroids the day of infusions and the day after in order to prevent headaches (which are a common side effect of IVIG). Since there is a risk of secondary…… Continue reading IVIG #2 Update Page
“Daddy said I should ask you about new medicine you are getting.”
Mindful of her hopes, I respond in as neutral of a tone as I can manage…
As predicted at the end of my last post, I did not post at all last month because it was busy. Here is how my month went… First up was the wedding weekend. On a Friday, we traveled from Illinois up to Iowa to attend a wedding on Saturday. We thought my body would behave…… Continue reading September 2016: Weddings and -ologists Galore!
I have spent most of my absence from blogging managing my medical issues, and taking panoramas of waiting and exam rooms.
A six year old’s ideas on possible treatments….
I’ve been very excited for us to have our Emma (5) for the week. I knew I wouldn’t be able to do much, especially with how I felt today and having a big day planned Sunday. She always gets the same Jackie as far as verbal interactions go. However, days where I can do anything…… Continue reading When I Say Yes, But My Body Says NO: Parenting and Chronic Illness