Living Life with Chronic Illness – Under Construction
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 →
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 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 →
I have spent most of my absence from blogging managing my medical issues, and taking panoramas of waiting and exam rooms.
In another post I'm writing (hope to post today), I intended to go on a slight tangent and say a few words explaining what a low FODMAPs diet is. It turned into a giant tangent and enough text to be its own post, so here it is. I have a lot to say about a... Continue Reading →
I have an appointment with my Immunologist tomorrow. I am sharing the report I put together for her on my experience with Medrol (methylprednisolone). Here is the post I wrote on day 2 of steroids which explains the "why" of this experiment and another post written as I began to feel less side effects from... Continue Reading →
Did you know I am an avid reader? I've been escaping into dystopian and sci-fi type novels, but suddenly I was in the mood for a book with a chronically ill protagonist. I've been in a bit of a funk and I thought a narrator who voices my thoughts, who lives life the way I... Continue Reading →
Going to a country where I am unable to speak the native language was a bit concerning for me as someone with a rare medical condition. I knew I needed to make sure I would be able to somehow communicate information about my medical condition to health professionals if the situation were to arise. Learning... Continue Reading →
