Because of a death in the family, I have spent much of the past month hundreds of miles from my caretaking partner and my healthcare team. My body has cooperated with this change of plans impressively well. Four days ago, though, I choked on one of these bad boys: Fortunately, I was able to stop…
It’s difficult to meet deadlines when this sick, but you guys definitely make it worthwhile when I can!Image Courtesy of http://cdn.roogirl.com/wp-content/uploads/2013/02/hearthands.jpg This has been a rough month (physically and emotionally), and it has pulled me in a number of non-blog directions. Sorry the promised September Real Post never happened. It’s helpful to remind myself that…
This summer has been the summer of medical procedures and surgeries for me. Last Thursday and Friday marked my fifth and sixth minor surgeries of the summer, and since then my body appears to have gone on vacation. No matter what I ask it to do, and no matter how nicely I ask it, my…
When I have an appointment with a new medical professional, I dread the part of the visit when I will have to talk about my chronic fatigue syndrome. Even if the first part of the visit is filled with compassion and signs that my narrative is being followed, understood, and believed, the part where I…
Image Courtesy of: http://www.sodahead.com/united-states/are-you-tired-of-malware/question-45891/?link=ibaf&q=&esrc=s Apologies, dear readers. I spent many hours researching for a Real Post which was to go up today, but one computer and two forms of backups have failed me, and my pages of research have disappeared. Normally, this kind of setback could be overcome, but life, the weather and my body…
Friday night, I spent hours speaking to a dear friend about my fatigue, and about my future. She helped me realize I had stopped hoping for any kind of cure, or even to just get a little better. As we talked about the possibilities of me returning to work, feeling better, or starting a family,…
I have written three previous posts about fatigue. One is an attempt to explain what chronic fatigue is like. The second is a checklist I use to get through days with especially low energy. Lastly, I wrote about how I communicate about my fatigue with doctors when they either don’t understand or don’t believe me.…
I have also written about my experience with disability insurance here and here. Most of my limited energy and concentration this week have been consumed with a decision that’s at hand. I spent a year and a half working with lawyers to appeal my disability insurance company’s decision to deny me benefits, but my last…
This post is the fourth part of my series, “Guidebook for Navigating New Chronic Illness or Disability.” Read the previous parts here: Part 1: You Realize You Can’t Work As Much or At All Anymore Part 2: When You Need Emotional or Mental Health Help Part 3: Getting What You Need From Your Doctors When…
This post is the third part of my series, “Guidebook for Navigating New Chronic Illness or Disability.” Read the previous parts here: Part 1: You Realize You Can’t Work As Much or At All Anymore Part 2: When You Need Emotional or Mental Health Help Getting What You Need From Your Doctors When you’re adjusting…
The Professional Patient 
