Six weeks post-SFT

A glass half empty "Two steps forward, three steps back" has been my mantra these past three weeks (week 3-6 post-SFT surgery). My brain feels as if it has been suspended in an opaque, viscous fluid that mutes and confuses my days. Since my last update, it's as if I have been inside a cocoon … Continue reading Six weeks post-SFT

Post-surgery updates

This blog will chronicle my progress after detethering surgery (SFT) on 8/19/2021. I expect my healing to be non-linear but hope for an overall upward trajectory. You can read more here and here for background on my surgery and why I decided to go forward with it. Check back here for future updates. THREE WEEKS … Continue reading Post-surgery updates

A survival guide to Mount Sinai South Nassau Hospital (MSSN)

I had invasive cervical traction (ICT), the intracranial pressure bolt test (ICP bolt) on August 17th, and sectioning of the filum terminale (SFT) surgery with Dr. Bolognese on August 18th, 2021. In this blog, I share some tips that helped me survive Mount Sinai Nassau Hospital, where Dr. Bolognese does his surgeries. I start with … Continue reading A survival guide to Mount Sinai South Nassau Hospital (MSSN)

Flying for surgery during the pandemic

Like most with ME, I have worked pretty hard not to get COVID. My goal was to keep my family and me safe until the vaccines arrived, knowing the pandemic is not over, and we are still at some risk while vaccinated. Even with my doomsday mentality, I never could have guessed I would be … Continue reading Flying for surgery during the pandemic

Surgical clearance

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

When playing “normal” with a chronic illness no longer works

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

Understanding the new COVID-19 vaccine technologies

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

10 tips for long-haulers seeking disability benefits

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

Balancing hope and acceptance with a chronic illness

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

Blunted heart rate and implications for pacing in ME/CFS

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