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 →
I haven't posted in forever! That's because I've had things to do each week and weekend. Typically, my social life is one family event a month, one or two medical visits, and the rest of my energy goes to existing, hanging out at home with Jake, and playing with Emma when she comes. Up until... Continue Reading →
lethargicsmiles 