Since the more common remedies for IVIG headaches did not work for me, a friend suggested I ask about trying a diuretic called Diamox. My doctor was down with the idea, so I tried it out with IVIG infusion #13. My IVIG Headache History RecapI experience no headache whatsoever during the infusion. The headaches usually do... Continue Reading →
IVIG #11 & #12 Update Pages
Since we now know what to expect with IVIG infusions, I have decided to switch from doing real time infusion updates to doing updates after I recover from my infusions. I continue to get 30 grams of IVIG (which works out to about 1.2 g/kg) every 2 weeks at a rate of 50 mL/hour... Continue Reading →
IVIG #10 Update Page
IVIG #10 was actually a week ago. Hopefully after you hear about how busy I have been, you will forgive me for not posting the IVIG #10 update page on time. For starters, we are in the middle of buying a house which is exciting but also requires a good amount of energy. Secondly, my... Continue Reading →
Insurance Finally Approved IVIG!
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 →
September 2016: Weddings and -ologists Galore!
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 →
Cleaning While Chronically Ill – It’s Slow
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 →
In Sickness and in Health – When Sickness Comes First
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 →
Nurse vs Patient Needs
"Everything we do is in service of our needs. When this one concept is applied to our view of others, we'll see that we have no real enemies, that what others do to us is the best possible thing they know to do to get their needs met." -Marshall Rosenberg I like this quote. There's... Continue Reading →
Why are some chronically ill patients so intense?
While the Infectious Disease doctor didn't have any "ah-ha" moments and definitely hadn't looked over my files ahead of time (her staff's fault for scheduling me as a patient with an acute need, not her fault), she did order a test I haven't had before called a Gallium Scan. Here is how things proceeded... Tuesday... Continue Reading →