Living Life with Chronic Illness – Under Construction
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 →
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 →
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 →
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 →
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 →
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 →
I spent the past few days alternating between resting, stretching, and cleaning. That may sound boring, however I am pretty excited about it. My house has gone a long time without a deep clean, and various obligations have meant I couldn't use my energy toward whipping it back into shape. All summer, I have looked... Continue Reading →
Thanks to Disney, it is well known that stepmoms spend a good chunk of their time formulating plots to ruin their stepdaughter's lives. I am no exception. One night this past winter, I could not sleep (which is to say, it was like every other night). As I lie there, trying to sleep, I began... Continue Reading →
I just got home from my appointment, which went well. It was a long day; we left at noon and got home at eight-thirty. I am not thinking about what a long day it was. What I am thinking about is my husband, Jake. I am feeling very appreciative to him for driving me to... Continue Reading →
Like many POTS patients, I have low blood volume, and must consume large amounts of fluid in order to increase it. In order to "hold on" to all the fluid I drink, I must also consume large amounts of sodium. Nurses tend to do a double take of my chart when they see a few... Continue Reading →
lethargicsmiles 