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
Some people have been asking about how I am doing (thank you!), so I thought I would post an update. Today is Monday and the infusion was Wednesday. I developed a bad headache on Thursday. I wasn’t concerned about it being aseptic meningitis since there was no vomiting, light sensitivity (photophobia), or sound sensitivity (misophonia).…… Continue reading The Week After IVIG #1
My first IVIG infusion (since a series of 3 in early 2015) starts in about 3 hours. I am not nervous because we have a solid plan in place to minimize side effects, and whatever is going to happen, will happen. However, many of my family members still worry about how the first infusion will…… Continue reading IVIG Infusion #1 Update Page
Well friends and family – I am happy to say that after several attempts made by multiple doctors, and 200+ hours of efforts on my part (research, synthesizing information, phone calls, e-mails) over the past 2 years, my insurance company has finally been convinced IVIG is a medical necessity in my case!!! “After careful…… Continue reading Insurance Finally Approved IVIG!
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!
Hello. I wanted to drop in. Most of the energy I have this week is going towards existing and prepping for an appointment, which is in 2 days. For the past year, I have not consistently fit in learning and researching on a weekly basis, which is how I used to do it. This means…… Continue reading Cramming for an Appointment/Went to a Wedding