Year Four
I’ve struggled for several days on whether to write an update this year: if it’s worth the effort to lay bare how another year of living with Long COVID has affected me. Ultimately, I decided that my story — for multiple reasons — needs to be told.
2023 began in a better place. I was hopeful of the possibilities and felt better physically and emotionally. In 2022, I stopped seeing my provider at National Jewish because, while very empathetic about my continuing health issues with Long COVID, they had nothing more to offer in the way of testing or treatment. So, that summer, I started seeing the folks at UCHealth-Anschutz’s Post-COVID Clinic (UCH). “Clinic” is a bit of a misnomer since it’s just a pulmonologist and cardiologist who spends only one day a week seeing Long COVID patients. However, that’s another topic entirely. Dr. Sarah Jolley, a leading researcher on Long COVID, is my pulmonologist. As UCH is a site for the National Institute of Health’s (NIH) RECOVER network, she has contributed to multiple studies on COVID-19 and Long COVID. I also worked with a physical therapist trained specifically in Long COVID rehab, who taught me to pace myself better and stay within my “energy envelope.”
In the early spring of 2023, I had a test called an iCPET that finally gave me a possible explanation for the burning in my lungs, which has been with me since the beginning of my illness: dynamic hyperinflation. It means my lungs don’t deflate completely when I exhale, so they are stretched further when inhaling the next breath. Think of blowing up a balloon, and that’s my lungs. It’s like COPD, but because it only happens on exertion, it’s not technically COPD. After playing around with medications, I’m in a place where this symptom is better controlled. However, the test required a unique IV called an arterial line. It took them six different tries to place it, and it ultimately caused damage to the radial nerve in my wrist.
In April, I decided to step away from my responsibilities with the COVID-19 Longhauler Advocacy Project (C19LAP). I worked with the organization as a group moderator and leadership team member for over 18 months. I had also accepted an offer to be on the Board of Directors. With no discredit to C19LAP and their incredible work, I felt that my energy could be better directed toward other endeavors. See, I have this dream… I’m working (in my little introverted brain) on a plan to help folks living with Long COVID, its associated conditions, and the problems they are facing.
I was actively taking steps to make my dream a reality… until June, that is…
It started with increased leg swelling, leading to tingling and numbness down my left leg and foot. But then the pain came. Pain that I can only compare to previous kidney stone events, except it was in my back. A visit to the ER and an MRI revealed that I had a ruptured disc in my back at L4–5. Not only was the disc herniated, but disc material was “sequestered” in my spinal column. I had bulging discs on the vertebrae above and below at L3–4 and L5-S1. The MRI also showed that I had cord compression with abnormal signaling at T10.
I was in a lot of pain. I couldn’t sit for more than five minutes at a time. Standing was not much better. Walking or being horizontal was about all I could tolerate. Less than two weeks after my initial ER visit, I had my very first ambulance ride back because the pain was so excruciating I couldn’t even walk.
I saw a neurosurgeon who refused to do surgery on me. My weight was the apparent reason, but they also said that I was too medically complex given my Long COVID history. Despite seeing my PCP and various other specialists over the past three years for my ongoing health issues, it was this neurosurgeon, in a 30-minute office visit, who added the Post-Acute Sequelae of COVID-19 (PASC) diagnosis to the health history on my chart. I already had the diagnosis from National Jewish, but none of my UCH providers had felt it necessary to add it to my health history until then.
I saw another neurosurgeon a couple of months later for a second opinion. Though unwilling to do surgery, he gave me additional information. They took X-rays, which revealed a minor fracture at the L5 vertebrae. He also called attention to details on the MRI that weren’t mentioned in the original report and suggested I be evaluated for Ankylosing Spondylitis (AS). I will see a doctor for that consultation in April.
Thanks to physical therapy and medications, I’ve reached the point where I can function better throughout the day. For a time, I needed a cane to assist with mobility because I couldn’t always feel where my left foot was when walking and would lose balance (which was already iffy because of POTS). That has improved. I am still in pain most of the time, but to be fair, I was before because of my headache and migraine disorder. This is just a different kind. My baseline, which was at a functional level of 2–3, is now at 5–6.
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The last half of 2023 was swallowed up dealing with my back and other health issues. I know it sounds like I am exaggerating, but I feel like my body is disintegrating; like it’s crumbling on the inside. And I can’t seem to get doctors to understand the urgency because the easiest thing for them to do (as it has always been) is to deflect and blame everything on my weight (or age… ). So, this year, I’ve decided to do something about that, too, almost as a belligerent middle finger to everyone to say, “Watch, I lost weight, and I didn’t get better.” If it takes spite and contempt to get me through mindless calorie and macro counting, then so be it. Bring it on.
There were bright spots and glimmers of improvement to be celebrated, too:
- I can read for pleasure again for the first time in three years. Something seemed to switch over, and it may have been because I was stuck in bed most of the time, but I read double the number of books I had read in previous years.
- I was invited to be a Patient/Caregiver Community Representative for the NIH’s RECOVER clinical trials. As a patient and someone with a lived-experience perspective, I give researchers input and feedback about the design and clinical trial process so that the desired outcomes better address the treatment and therapy needs of the Long COVID community.
- I was asked to do a podcast for an online professional healthcare newsletter to discuss specifically my experiences with medical gaslighting during the first couple of years of my Long COVID journey. The podcast is still in production but should be out soon. I’ll keep y’all posted!
- Then there is my dream… it’s still a work in progress, so I’m keeping it under wraps for now, but it’s there. In the meantime, I will continue to educate about Long COVID, even if it sometimes feels like I’m a voice shouting out into the void. I will also advocate fiercely for more providers and researchers to look at the musculoskeletal impacts of Long COVID. It hasn’t been a priority like organ system, cognitive, and immune system damage. Still, just from an anecdotal survey, there are so many people in our community dealing with chronic pain due to bone, joint, and connective tissue issues. It needs attention.
This latest COVID wave guarantees a whole new cohort of long haulers will, unfortunately, join our community ranks. Despite the treatments that may help during acute infections, despite variants that cause less severe infections, people are still developing Long COVID. If public health education does nothing to warn against repeated COVID-19 infections and, more importantly, does nothing to prevent them, even more people will develop Long COVID. The estimated cost to our economy and healthcare, let alone our personal bank accounts, is staggering.
Once again, I have found a new normal. I’m not okay with it (I don’t know that I ever will be), but I’m coming to terms with it: a new acceptance, if you will. All I can do, what I always have done, is put one foot in front of the other and continue to hope.
Per aspera ad astra; through hardships to the stars.
