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.…
For anyone tuning in to find Part 2 of my special feature on private disability insurance, please have patience, and tune in next week. Last week was full of appointments which repeatedly demanded more of my body than I had to spare. It wore me down, and I finally admitted to my partner that he’s…
85% of clinicians view CFS as a wholly or partially psychiatric disorder; and hundreds of thousands of patients cannot find a single knowledgeable and sympathetic physician to take care of them. Patients believe that the name CFS has contributed to health care providers as well as the general public having negative attitudes toward them. –DePaul…
Wishing All My Readers A Wonderful Holiday Please be compassionate with yourselves and each other. Read this link if you’re sick and want to learn how to explain what you’re up against. Read this link if you want to understand what a sick loved one is up against. It’s a very helpful piece by Toni…
So now I’ve devoted a full post each to my fatigue symptoms and my pain symptoms. With that out of the way, I’m writing to tap the collective smarts of the internet, to see if anyone might have some tips about getting the right diagnoses and treatments. Here’s what I know about my body’s quirks:…
This post is hard to write. It’s more personal than the other posts I’ve put up. However, I think it’s important to share the backstory of what I’m up against, especially because it’s an invisible illness. It’s easy for people to misunderstand what I and others like me are up against, and so I’m sharing…
The Professional Patient 