You learn a lot being sick for 5 years and I continue to learn new methods to manage being chronically ill. This ranges from techniques to manage pain and fatigue to tips for mentally coping.
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 September 2016: Weddings and -ologists Galore!
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 Cleaning While Chronically Ill – It’s Slow
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 In Sickness and in Health – When Sickness Comes First
Here are some pictures from our visit to the Shedd Aquarium a month and a half ago. Visiting Shedd has been a goal of ours since 2012. We finally realized there possibly may never be a “perfect” time to go in terms of my health; we needed to just go for it! I am proud…… Continue reading Visit to the Aquarium
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 Steroid Experiment: Thoughts, Pros, Cons
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 “The Moonlight Sonata at the Mayo Clinic”
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 POTS Alert Cards in English and Spanish
