After deciding to have surgery, I felt a sense of relief because I finally could put down all of my what-ifs and relax into the decision. Everything seemed to be falling into place. I looked forward to turning over a new leaf of feeling less intense about life and my illness. Such lofty feelings gave … Continue reading Surgical clearance
I find it increasingly challenging to be part of the healthy world as my illness grinds on. After all, who wants to hear about the various insane things my body is doing at any given moment? Heck, I don't even want to think about my illness, let alone talk about it. On some level, I … Continue reading When playing “normal” with a chronic illness no longer works
I had several questions about the new COVID-19 vaccines but found it surprisingly difficult to find the detailed information I was seeking in a consolidated place. This three-part blog synthesizes some of the information I found informative. I focus mostly on the biology of the new vaccine technologies, including mRNA, recombinant viral vector, and recombinant … Continue reading Understanding the new COVID-19 vaccine technologies
A couple of weeks ago, I wrote a piece for the Mighty about how long-haulers, those who remain sick after getting COVID-19, will likely face many of the same issues people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) deal with when applying for disability benefits. Having a contested illness, such as ME/CFS or chronic COVID, makes … Continue reading 10 tips for long-haulers seeking disability benefits
Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly hope and acceptance are not mutually exclusive, but over time … Continue reading Balancing hope and acceptance with a chronic illness
In a nutshell: Chronotropic incompetence (CI) - the inability of the heart to keep pace with increased activity - is common in myalgic encephalomyelitis (ME/CFS)CI is worse in women with ME/CFS but both men and women have a lower than expected heart rate at the anaerobic thresholdCI is worse in those who have a more … Continue reading Blunted heart rate and implications for pacing in ME/CFS
Note - this blog is geared toward an American audience as it only applies to federal disability in the United States. I am certainly no expert on disability and the thoughts below reflect my experience only, while acknowledging that there are many ways to approach disability benefits. I will admit to bumbling through my Social … Continue reading A long, technical support letter helped me to win my SSDI case for ME/CFS!
As with many people, I reached coronavirus saturation about a week ago. That said, I don't want to miss out on key research findings so I continue to scour Twitter for commentary from experts and for newly-published peer-reviewed papers on SARS-CoV-2 (the virus) and COVID-19 (the disease). But in the past few weeks, I have … Continue reading Be a voice of support during COVID-19
Many people who go on the ketogenic diet see incredible health gains only to discover their LDL cholesterol (LDL-C) has skyrocketed. Rightly so, many people resist giving up their low-carb lifestyle due to its many benefits. A deep distrust of doctors and pharmaceutical companies, not to mention decades of farcical advice on nutrition, leads people … Continue reading Keto and ME/CFS (Part III): lipid models and the lean mass hyper-responders (LMHR)
Frozen in Amber 