What if it is inflammatory arthritis instead of fibro?

~ Caroline Elizabeth ~ Leave a comment

TL; DR: Do you experience a lot of inflammation, widespread body pain, tendonitis, and peripheral joint and spinal pain? If so, you may benefit from exploring a group of autoinflammatory/autoimmune diseases called spondyloarthropathies in the differential diagnosis. Spondyloarthropathies are a group of related autoimmune rheumatological diseases (AIRDs) that can be challenging to diagnose because they … Continue reading What if it is inflammatory arthritis instead of fibro?

Sick and single

~ Caroline Elizabeth ~ Leave a comment

My husband and I separated in 2022, leaving me single for the first time in decades. While the separation process was a special kind of hell, I have landed on my feet for the most part. I harbor no ill will toward my ex, as our uncoupling has allowed us to keep the best parts … Continue reading Sick and single

My IV saline journey

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My previous two blogs touched on IV saline for dysautonomia and exertion intolerance in ME/CFS and Long COVID and the ins and outs of IV access. In this blog, I discuss my journey to getting a port for IV saline. If you want to explore IV saline therapy, determining your angle for this treatment may … Continue reading My IV saline journey

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

~ Caroline Elizabeth ~ 2 Comments

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

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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 ~ 6 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?