Living Life with Chronic Illness – Under Construction
Hello everyone! Here is a quick recap: Today marks 6 weeks since I began receiving 30 grams of IVIG every other week to treat autonomic neuropathy secondary to Sjogren's Syndrome. It is my fourth infusion. I have struggled with headaches, but otherwise have tolerated treatment quite well. With this last infusion, fatigue was... Continue Reading →
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 →
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 →
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 →
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....
