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
How I decided on surgery for occult tethered cord syndrome
As some of you know, I decided to move forward with tethered cord surgery (SFT) this August with Dr. Paulo Bolognese. I will be blogging about my surgery journey in case it helps others walking this path. Of course, my story is only one of many, but I have certainly benefitted from hearing about a … Continue reading How I decided on surgery for occult tethered cord syndrome
We are failing people with very severe ME/CFS
Cort Johnson kindly published a piece I wrote - more of a manifesto - on my reflections on advocating for people with very severe ME/CFS. This piece struck a chord for many. There are many areas needing attention - I hope to work with others on some of the suggestions I outline in my article … Continue reading We are failing people with very severe ME/CFS
The reluctant patient
I am exhausted from being a patient. In the early days of my illness, I kept a journal, tracked symptoms, and made schedules. Now, I cannot be bothered on most days, but recently I have had to re-engage with my medical care due to declining health. For years, I actively pursued tests that might shed … Continue reading The reluctant patient
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
Frozen in Amber 