@samnorpel
Wife, Mom, Former Executive, now #disabled by #LongCOVID. When I feel up to it, I try to use #ArtTherapy 🎨 to express what life is like as a LC patient 🖼️ & raise awareness. I also paint flowers 💐🌺🌻 to bring a little joy.
Congress needs to protect brain injury programs.
📣 Take Action Now: Click the link below to email your Representative. Urge them to support the Luttrell-Deluzio letter and stand up for the brain injury community.
biausa.quorum.us/campaign/12028…
🕒 Deadline: April 25, 2025
Thx for listening. 🙏🏻❤️
Ps. One last thing, what experience as a patient would you like to see brought to life in a painting?
I could use some inspiration. 🫂
Living in with #LongCOVID (& #MECFS) is an endless cycle off missing payments, denials, appeals, letters I struggle read & process. The policies we pay into for a rainy day, are not there to support us. No wonder we are in the 🛁 😭thinking our families are better without us. /13
…by your neurologist. If you can’t afford said OOP treatment and don’t do it, LTD the floor above the cafeteria, will boot you from your policy because you didn’t follow your doctors prescribed orders or because LC is psychosomatic. And so this is what my painting represents./12
So here’s my evaluation of dealing with an insurance company and having LC (my lawyers will probably prefer this to be deleted).
On one floor, they will deny you for life insurance for LC because you are too big a risk. Across the hall they will deny coverage for cog therapy prescribed …/11
My LTD company has decided that my LC is “psychosomatic” so now I’m appealing with a lawyer. Apparently I’m young in their eyes (50?!) and my policy is worth the “deny, delay, defend”tactic and there is no recourse for wrongful termination. It also doesn’t matter that I’m on SSDI. Fun times. /10
…hoping I can find research showing that cog therapy does help LC patients.
BTW, I now pay for cog therapy at a discounted OOP rate because my current insurance doesn’t cover it at all. Has anyone seen this research? 🧐 LMK 🙏🏻
Oh and the 2nd letter, my LTD company…/9
A week after I painted this, I received 2 letters in the mail, 1 again from my ins company denying my appeal to pay for my cog therapy as saying it can’t treat covid; which if I didn’t do, is grounds for my LTD to boot me. So I can pay $2k+ out of pocket or appeal again…/8
Sam’s LongCovid painting show words from the denial letter from her healthcare insurance company for cog therapy saying it was exploratory for LC, words from the SSDI assessment saying I have impairment and can’t manage my finances, words from my cog therapist saying I’m impaired, to a letter saying they can’t make a decision if I’m able to do a job that would pay me 80% of my csuite salary. The painting is a sketch of a woman with headphones and blond hair with her arms crossed leaning over stacks of papers and folders for all the various providers (mayo, Penn) and insurance companies (guardian horizon) and SSDI, Medicare.
“Long Covid: Delay, Deny, Appeal, Repeat” by me, Sam Norpel (10/2024)
This painting features actual quotes from SSDI finding I’m disabled, to denial that I need cog therapy, to a new request for another neuro psych evaluation./7
Over & over. Standing over the counter, in the bathtub,planning, preparing, giving away items & finally hearing myself “Get help.”
In 1/2023, I let the trusted doctors know how badly I was doing, changed my meds, therapy weekly.
But the thoughts come back if I overdo it. I have to watch it. /6
I’m 2 years out from this from this daily torture but as I typed these words again this internal struggle came back like a tidal wave: “Failure.” “Hold On.” “You should be dead.” “Don’t give up.” “They don’t need you anymore.” “You are loved.” “You don’t do anything here.” “Hold on.”/5
These two versions of Sam are supposed to represent my internal struggle, the fight between these 2 me’s that I was hearing in my head. I had never experienced anything so irrational in my life as I did after the neuro inflammation from #LongCOVID. /4
A depiction of 2 versions of sam at different stages of LC one with unhighlighted dirty blonde long hair, headphones and sunglasses and negative words like “they don’t need you,” “just die,” etc and the other is a sam smiling with headphones around her neck not needing sunglasses, wearing ear buds to block sound still, and words saying “hold on,” “they still love uou” etc. these two represent my internal struggle and the 2 mes fighting myself about deciding to kill myself or not because I believe my family would be better off without me.
DMing with a LC patient about our #LongCOVID #SuicidalIdeation inspired my next 🖼️.
“Long Covid: Suicidal Ideation ‘Thoughts in My Head’” by me, Sam Norpel (8/2024)./3
Sketch-like painting in gray tones of a Women in the bathtub hugging her knees , head on her knees so she is “in a ball”. Cut pictures and business items into chard-like pieces representing glass shattered of her life destroyed by COVID pasted all over her body and in the water. Tears falling down her knees and thighs into the bath water.
“Shattered Life: Long Covid” by me, Sam Norpel (February 2023)
I painted this explain to explain why even though I was physically better than a year prior, I was emotionally at my worst. Grieving the life I had lost, family & finances strained. I still find myself angry & grieving 2 years later. /2
🧵In honor of #longcovidawareness day Saturday, I’m sharing the artwork I’ve created & previously posted on X. I’ve had another one in the works for a while that just hasn’t gotten very far. On Sat, I had been sick for 1,179 days… #arttherapy #livingwithlongcovid #longcovid
You are not alone.❤️🩹❤️🩹❤️🩹 /1
What if something as simple as walking across the room became impossible? That’s was reality for years. Once healthy& active,I’m now housebound, struggling with fatigue, brain fog, pain, heart palpitations, and breathlessness. We need research & awareness. #LongCovidAwarenessDay
Some resources for #LongCOVIDAwarenessDay, a thread 🧵
1. The Pacing Guides, for activity management; includes guides for adults, peds, and a cited version for clinicians. Latter two created in conjunction w @longcovidfam.bsky.social and @patientled.bsky.social.
www.meaction.net/resource/pac...
This piece made me cry big fat tears. Thank you @heatherhogan.bsky.social.
NEW: Cuts to Columbia University funding have shuttered a prominent research center into ME/CFS, a debilitating condition with no FDA-approved treatments. It's a gut punch to a community that for years has been frustrated by a lack of funding. Developing... www.statnews.com/2025/03/19/m...
ID: A poem titled, “For These Brief Moments” with melodic piano music playing. I measure time by the angle dim slivers of light enter my room each morning from behind ever-closed curtains, by the way their faint glow subtly shifts through the day, until it fades beyond the reach of dusk. One year bedbound, I lose track of the natural world, the only place I didn’t question if I belonged. But strains of it still drift through walls in birdsong, distant banter of crows, whispered echoes of rain. Spring’s finches grow chummy in summer. Each day, around noon settling on the windowsill just above my head, bathing in the warmth of the sun for much of the afternoon. I can’t see them but hear soft scraping of claws scampering about, occasional fluttering of wings, bickerings over who sits where. And for these brief moments I am not lonely.
A bedbound poem on isolation and our frayed connection to the outer world that reminds us — we will always belong.
#LongCovid #MECFS #pwME #chronicillness
#poem #poetry
📣It’s time for the Long Covid Madness Bracket Bash!🏀💙
No basketball knowledge? No problem! This is all about fun, community, and Long Covid awareness. Anything goes!
Everyone’s welcome! #LongCovidMadness
Hosted by @samnorpel.bsky.social, @justkim.bsky.social, and me.
There's a myth that long COVID doesn't affect kids. Because they didn't get severe disease. But the newest research indicates 6 million kids may have long COVID-serious physical & mental problems. This--not lockdowns--can account for historic poor school performance. Read how we can fix this. 🧪🩺
"OITNB Star Matt McGorry Shares Warning To Followers of 'Debilitating' Long Covid Symptoms"
'The Orange Is The New Black star took to Instagram to share how long Covid has "massively impacted" his life, taking the opportunity to tell the public...'
toofab.com/2024/10/29/o...
“The normalization of repeated infections, preventable deaths, and anti-science propaganda is tearing the fabric of society, with the most marginalized hanging by a thread.” www.teenvogue.com/story/covid-...
Today @thesicktimes.bsky.social we are live blogging the Polybio Fall 2024 Long COVID Research Symposium. Check in throughout the day for updates from leading Long COVID and IACCs researchers!
thesicktimes.org/2024/11/08/l...
