Month: June 2022

Confluence

/ suebisco1 / Leave a comment

The words “We’re living in challenging times” has become a gross understatement. I’m going to set aside the “challenging” for a minute – guns & mass shootings, abortion, inequity, injustice, etc etc etc etc – and do the truly selfish. I’m going to focus on myself.

One of the challenges people with fibromyalgia have is to know when to go to the doctor. I’ve talked about it before – my rule is, if I have a new symptom and it doesn’t change or get better within a “reasonable” amount of time, I have it checked out to be sure it’s not something like the pulmonary embolism I ignored for a very long time until I was in heart failure. It’s a simple rule I explain to the doctor right off the bat, so they understand I don’t intend to sit in their chair until they make the symptom go away. I acknowledge there probably is nothing to be done, so they give the concerning symptom their full attention. So far it has worked beautifully.

However, in our challenging times, people with fibromyalgia are facing a confluence of fibromyalgia symptoms and the lingering specter of COVID symptoms. I have not had COVID so I can’t attest to what it’s really like, and that’s part of the problem. I’m fully vaccinated and doubly boosted, so if I get COVID, it will probably be mild, often described as cold-like symptoms. So when I got a mild cough and started feeling a bit more fatigued and achy than usual in February, I got a COVID test, negative, took into account the likelihood of a false negative, isolated myself from my octogenarian parents just in case, and waited for the symptoms to go away. COVID tests since then have all been negative, and the symptoms have not gone away. So we’re into the 5-month range and the symptoms are just worsening.

I finally, very reluctantly dragged myself into the doctor’s office. I was reluctant because I’m overweight, so of course I have a problem with shortness of breath. I’m just deconditioned, right? Unfortunately, it’s become severe shortness of breath and my lifestyle is severely limited. Heart palpitations upon the slightest exertion. The fatigue is unbearable at times. Normal fibro pain has grown exponentially. But I’m sure I’m just overweight and out of shape, right?

I’ve had paroxysmal atrial fibrillation for years. Occasionally my heart just beats a bit wrong, but because the wonky beats are in the atria (upper chambers) and not the ventricles (lower chambers), not a big deal. So I went to the doctor and said, you know, I think my AF has gotten more than paroxysmal. After explaining the symptoms, the doctor ordered a stress/echo test, which I took yesterday. I don’t know how long I lasted on the treadmill, but it wasn’t more than 5 minutes. I don’t have all the results, but yes, my AF ticked in with exertion. I have an appointment in Cardiology in July.

Fibro + a COVID world = the possibility of missing something important (or hypervigilance). I work with ENT surgeons who have been horrified the last couple years because people are waiting too long to get help with symptoms that are ultimately a head and neck cancer. I should know better. I know myself. I self-diagnosed. And I ignored it for five months.

“Disabled”

/ suebisco1 / Leave a comment

I’ve said it before, I love the Try Guys. They’re just so cute (I say with my grandmotherly voice). Zach Kornfeld is my favorite. I just saw this week’s release, “Why Don’t We Care About Disabled People?” Zach has ankylosing spondylitis. I don’t understand it completely, but know it’s an inflammatory disease, chronic pain condition. That’s not why he’s my favorite. I love his upbeat and empathetic world. Anyway, this episode talks with several of Zach’s friends who have disabilities and how COVID has impacted their health and well-being, down to not always having someone to help them get out of bed or take showers.

It’s a slap in the face to realize people with disabilities (and the elderly) were essentially hearing from the CDC and the general public that their lives are less important than abled people, and they would be the ones who would be “let go” if there weren’t enough respirators, etc. I realized I have stopped having a mask at the ready in case I came face-to-face with someone wearing a mask. If someone is wearing a mask now, they have a reason to wear a mask, and I have to respect and support that decision by masking myself. I’ll get back into that habit.

My second biggest takeaway is hearing Zach say he was disabled. It was hard for him to say. It reminded me that there are invisible disabilities. Zach doesn’t “look” disabled or “act” disabled in his videos. People with long COVID won’t “look” disabled either. And I started thinking…

When I was originally (mis)diagnosed with juvenile rheumatoid arthritis when I was 15 or 16, the school counselor called me into his office and told me I should apply for all this aid, basically register myself as disabled. I didn’t feel disabled even though I was in pain all the time. Furthermore, I had a friend who had “real” arthritis and you could see it in the way she moved and the way her joints and back were malformed. I came close to yelling at the counselor for being willing to squander resources when there were “real” disabled people out there who need that assistance far more than I did.

Almost 50 years later, I’ve never identified myself as disabled. I have an aversion to categorizing people in any way, by ability or disability, by race, sex, age, etc etc etc. There are a lot of etcs. The problem is categories create boundaries, “them”s and “us”s. There are so many truly artificial, literally skin-deep, ways to categorize people… it’s just meaningless. Unfortunately, reality is that people are categorized every day because not everyone can not see those boundaries. Until no one sees those boundaries and reacts to those boundaries, people to have to identify themselves and stand up for themselves and demand to be seen and heard. Which then emphasizes those categories and boundaries instead of allowing people to set them aside and simply treat people as they themselves want to be treated. Insert swirling vortex of catch-22 here.

I’m fortunate to be in a job and have a social support system where I don’t feel the need to identify as a disabled person. I don’t have to try to apply for disability funds or financial assistance. I’ve learned to navigate the medical system to keep myself safe and the care I need. I’m very lucky.

The fact is, however, I am disabled and have been most of my life. Admitting it, saying it out loud, does not change how I live my life or how I view myself. What does it matter then? I don’t need to identify to have a safe space with other disabled people. But maybe it’s important to add my voice for people who aren’t as fortunate as I am.