Living Life with Chronic Illness – Under Construction
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 →
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 →
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 →
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 →
While the Infectious Disease doctor didn't have any "ah-ha" moments and definitely hadn't looked over my files ahead of time (her staff's fault for scheduling me as a patient with an acute need, not her fault), she did order a test I haven't had before called a Gallium Scan. Here is how things proceeded... Tuesday... Continue Reading →
If you've been reading my blog, you know I have been to both Mayo Clinic (Minnesota) and The POTS Treatment Center for help managing POTS. Most of my posts touch on all of the positives of each place. While I mentioned my personal struggles with getting through each program, I didn't really mention what I... Continue Reading →
Patience: the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset Proactive: creating or controlling a situation by causing something to happen rather than responding to it after it has happened I am a proactive person and always have been. I don't wait around for the world to magically make... Continue Reading →
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