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 →
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 →
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 →
Why Sports Drinks Aren’t My Drink Of Choice For Sodium Loading
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 →
Lack of Posts Brought to You by Poor Health and Insurance Companies
I have spent most of my absence from blogging managing my medical issues, and taking panoramas of waiting and exam rooms.
My Experience with a Low FODMAPs Diet
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 →
The Steroid Experiment: Thoughts, Pros, Cons
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 →
“The Moonlight Sonata at the Mayo Clinic”
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 →
POTS Alert Cards in English and Spanish
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 →
When people say I look pretty…
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 →