The ins and outs of IV access for saline to treat dysautonomia

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In my last piece, I discussed practical approaches for building a case for IV saline to treat orthostatic and exertion intolerance, two primary features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID (especially those meeting the criteria for ME/CFS). IV saline helps treat various forms of dysautonomia, including postural orthostatic tachycardia syndrome, orthostatic hypotension, … Continue reading The ins and outs of IV access for saline to treat dysautonomia

IV saline for dysautonomia in ME/CFS and long COVID

~ Caroline Elizabeth ~ Leave a comment

There are no FDA-approved treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, a problem patients are acutely aware of. Despite this shortcoming, there is one treatment that has the potential to give people with these diseases a boost in physical and cognitive function: intravenous (IV) saline. I wish people with ME/CFS and long … Continue reading IV saline for dysautonomia in ME/CFS and long COVID

When positivity undermines connection

~ Caroline Elizabeth ~ 2 Comments

Positivity harms many with chronic illnesses because it can deny people their experience. A quick scroll through my friends' social media accounts reveals meme after meme decrying "toxic positivity" - a form of gaslighting involving dismissing and invalidating genuine emotions. Looking on the bright side and focusing on the positive may be helpful in some … Continue reading When positivity undermines connection

One-year tethered cord surgery update

~ Caroline Elizabeth ~ 3 Comments

Transformation What a year a difference can make. One year ago, I flew home from New York after having surgery to fix a tethered spinal cord - a manifestation of my hyper-mobile Ehlers Danlos Syndrome (hEDS). I woke up after my surgery on the precipice of transformative emotional and physical healing - an experience several … Continue reading One-year tethered cord surgery update

Life force

~ Caroline Elizabeth ~ 4 Comments

Living with a chronic illness is a reductionist endeavor. As pieces of us slip away and our lives diminish, we can lose sight of what it means to be a human. We are wired for connection to others, joy, love, pleasure, beauty, adventure, mystery, and more. Over time, a benevolent form of amnesia has allowed … Continue reading Life force

Six month post-tethered cord release update

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Time for a six-month update on my spinal cord surgery on August 18, 2021! I'll try to keep it brief (haha). TL; DR - it's mixed. Bladder: I had high hopes for bladder improvement, which rapidly vanished in the initial weeks after my spinal cord surgery (called sectioning of the filum terminale, SFT). My bladder … Continue reading Six month post-tethered cord release update

When will I get better?

~ Caroline Elizabeth ~ 2 Comments

The Nevada Independent published an op-ed I wrote to address a question on the minds of many - when will I get better from COVID-19? One of the most painful aspects of the pandemic as a chronically-ill person is seeing the unfolding of one of the most significant mass disabling events the world has seen, … Continue reading When will I get better?

Three month post-SFT surgery update

~ Caroline Elizabeth ~ 1 Comment

Chronic illness dismantles our life force, but what does it look like to reassemble it? As I reflect on the three-month mark since my surgery for tethered cord syndrome, I realize that recovery can't be captured by a list of symptom improvements (though scroll to the bottom to Table 1 for the TL; DR version). … Continue reading Three month post-SFT surgery update

I needed that like a hole in the head: what my invasive cervical traction and ICP bolt tests revealed

~ Caroline Elizabeth ~ 2 Comments

This is a slightly more technical piece with a lot of jargon - my apologies. It is geared toward people on the path to determining if they have cranial cervical instability and have some knowledge of this topic. I am happy to answer any questions readers may have. My neurosurgeon offered two "appetizers" to go … Continue reading I needed that like a hole in the head: what my invasive cervical traction and ICP bolt tests revealed

Six weeks post-SFT

~ Caroline Elizabeth ~ 3 Comments

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