the figure on the manila anatomical bookmark is against a dark ink background. their body is colored in dark green-blue, with vibrant trans pride flag colors across their body diagonally, the white at their lower abdomen. Their face is drawn in extreme concern. A speech bubble shows them asking, "is there a less invasive option?" a drawing of a disembodied white coat,with jagged edges and allmost glitch-like shaking lines is before them. The white coat also has a speech bubble, and replies, "this is the less invasive option."
This is not medical advice, this is a summary of things I have read from various studies, journalists, and newsletters, and what I try to prioritize for myself. I send this to loved ones who accept my offer for it when they or someone they know gets infected, and I figured I should make it more broadly accessible.
Ways to Lower Your Risk of Long Covid &
Lower The Severity of A Reinfection’s Worsening Your Long Covid
Medicines, Vitamins, and Supplements
Increase Vitamin D ASAP and sustain it for at least a month. It’s a reserve vitamin so you can’t cram it all in 2 days, and should not. It is possible to have too much Vitamins A & D, so please be mindful of dosing.
Increase Iron ASAP and sustain it, similarly to above.
Zinc, like Vitamin D, is key to our immune system’s functioning & signaling. Zinc can help boost underactive immune features, calm overactive immune features, and reduce inflammation. Additionally, studies have found Zinc levels are significantly reduced during Covid infection, and reduced in relationship to severity of infection, so it makes sense to combat this.
H1 Antihistamines have preliminary research to support them decreasing LC risk and SIGNIFICANT research supporting them as treatments in Covid-19 infections, plus ways to lower your Covid infection risk overall. All H1 antihistamines have shown in vitro benefits, however the ones I’ve seen most studied in humans are cetirizine/zyrtec, ebastine, azelastine, and loratadine. Most trials in humans used modern antihistamines, which I agree with. I do not generally suggest any first generation antihistamines including Dramamine, Benadryl, NyQuil, or their generic versions unless you have a medical reason for choosing them & their adverse anticholinergic effects. H1 antihistamines are typically available without a prescription in the US.
A recent study from Germany found a Nasal H1 Antihistamine, Azelastine Nasal Spray reduced covid infections by 69% (nice). More research is needed, but a 2x a day dose of Azelastine, or 3x a day dose of German Azelastine is extrapolated to be beneficial from a long covid precaution perspective, similarly to other H1 medications above. This is typically available without a prescription, and is inexpensive in the US.
H2 Antihistamines, especially Famotidine/Pepcid, reduce both symptom severity and viral load, leading to an earlier resolution of infection. These are available without a prescription in the US, and typically inexpensive.
Paxlovid is less effective at decreasing Long Covid risk in the acute phase, but does have other benefits, even if started late. It is additionally showing progress as part of a combination therapy. Stock up on mints and cough drops though.
Magnesium, Vitamin C and other immune-boosters can be very beneficial IF you are not autoimmune/don’t have other relevant considerations.
If you are on trans masculine HRT or similar medications please continue. Men & NB people with similar levels of hormones have lower risk and sometimes lower symptom burden than women & NB folks with similar hormone levels. We aren’t sure why yet.
Other OTC items which might help lower the viral load or otherwise make the acute infection less impactful:
A mouth wash containing PVP-I [povidone-iodine] or CPC [cetylpyridinium chloride]. This can be used multiple times a day.
Green tea (ECGC)
Hibiscus tea (ACE2)
Antioxidants and omega-3 fatty acids (including flaxseed oil, fish oil) help remove oxidative stress, which is helpful in both acute Covid (infection and replication causes OS) and in multiple forms of Long Covid. I’ve read . Antioxidants are vitamins A, C, E, Selenium (Se), and Zinc (Zn). Vitamin A is possible to overdo, so please be mindful of dosing.
Transmission Precautions (how to protect people you live with, etc):
COVID is most often transmitted via the air, not droplets like we thought early in the pandemic. As such:
Fresh air will be your easiest and most effective option, assuming climate safety. Even a slightly open window will be MUCH better than closed windows.
Masks are extremely effective, especially when both parties wear them. Respirators (aka a mask with a safety rating such as N95, KN95, KF94, P2, FFP2, DS) are best, but anything is better than none. Try to get as good of a seal as you can/minimize air leaks.
Air filtering with HEPA filters is great if you have access and funds. Try to make sure the filter(s) you use are sufficient for the square footage of the space. Earlier variants had a filter goal of 6 air changes per hour (ACH), but anything is better than nothing, especially when combined with opened windows, etc. If the filters are insufficient for the square footage/meterage or ACH, place them for largest impact: for example close to the sick person, in areas with poor ventilation, or areas of high social contact.
If HEPA filters are too expensive or unavailable, try to make a Corsi-Rosenthal Box (a DIY air filter alternative using MERV13+ filters and a box fan, free directions abound online). Same strategies as above.
Last home air filter precaution: most climate control systems have a filter, and if that filter is already or can easily be changed to a MERV13+ filter, that will be an additional help.
If you must run errands/go to work/etc, please prioritize one of the rated respirators above. Try to do curbside or other distanced, outdoor pickup options where available.
There are nasal precaution options including the aforementioned OTC H1 Antihistamine Azelastine and Profi Spray (which is highly effective, but their science was measured with nasal swab application, not spray).
It doesn’t take a lot: We have stopped the acute spread of Covid in our home two times (that we know of!–the real number is probably much higher) by using only a couple strategically placed HEPAs and window cracking.
If you feel any sustained exhaustion or fatigue, please rest and do not push yourself for at least two-three months after infection, including physical and mental exertion. A lot of us long haulers had an inkling early on that something was off but we pushed ourselves to be “back to normal” and that caused immense lasting harm. It might sound like a long time now, but a few months is a short time in comparison to the rest of your life. Trust me.
I wish I had read this earlier: Indefinitely Ill – Post-Covid Fatigue
Pacing is the most helpful tool I have found for my health, and has been practiced by people with post-viral illness for a long time.
Intro to pacing: ME Action’s Stop Rest Pace
Scheduling breaks with reminder alerts is how I do it, and by having specific things I look forward to about downtime (slowed audiobooks, a nature soundscape, etc). Some people are better at remembering on their own.
Lastly, I recommend using a symptom tracker even for initial infection (and that couple month period after). Hopefully before too long there won’t be many symptoms to track and things’ll be mostly a-ok, and it won’t be needed, but the way covid makes the brain all squiggly, IMO tracking symptoms is super important for understanding what your body needs to have your best chance at maintaining your current health!
The app Visible is popular in some LC communities, but a journal or calendar is a-ok too. It helps to check in with your body and see how much feels safe to do and what to prioritize. (Visible is free for symptom tracking and I recommend the free version short-term. If you end up needing long term pacing help and want to include the paid wearable, though here’s my coupon code: https://join.makevisible.com/68284299c4dc3e )
**Thank you for taking care of yourself and your communities. We need all the precautions, kindness, and care we can get right now.**Additional Covid Safety info from someone else’s patreon: https://www.patreon.com/posts/huge-free-covid-86871700
the figure on the bookmark is silhouetted in outline vs the shape of a house, outlined in red and filled with purpley blue textures. the head of the figure, angled to the side, is attacked from all angles with dark rough textures of inky depths with red/rust particles, and purple angular lines pointing inwards, and breaking past the lines of the house. the figure stands on a square of purple ink as well, which balances the composition
Had a reflexology session gifted to me with a practitioner I trust implicitly. She started with aroma therapy (which she knows I'm hypersensitive to) that was for hypothalamus support.
The hypothalamus sits at the junction of the autonomic nervous system and the endocrine system (her explanation, I have yet to look it up).
SO, my question is this (beyond wanting to know how muscle testing told her both of those are mucked up in me):
Does a hypersensitivity to smells "know" when a scent may be helpful and back off? Or am I just OK with eucalyptus (the main scent I could identify)?
And, did the session and/or the scent lead to me having what I believe is an MCAS attack this morning?
She did reseat 3 ribs that were tweaked (subluxated) which I *hope will take care of a long-standing nerve issue in my back.
If you haven't tried reflexology and are OK with your feet being touched, I cannot recommend it highly enough.
Any of my fellow late-realized #ActuallyAutistic fedi-folks dealing with #mcas? I'm trying to self-diagnose (I know, I know, but I lost my COBRA insurance and my state coverage may or may not cover this, so I'm looking into it to see what I can try on my own first) some on-going shit I deal with and this seems to fit really, REALLY well.
I've spent the last year visualizing Long Covid. Not all of my favorite pieces work well in square crop, so please check out the fedi account above or https://illmarks.com !
Thank you so much for receiving & sharing my work--it means so much to me as this project continues to feel deeply important.
9 images collaged in 3x3. they are all straight-on views of a figure on manilla paper, with a printed silhouette of a human. They've been brightly adorned with ink to show a variety of physical and emotional ailments that the patient experiences. In the center is a smiling mirror selfie of a person with sideshaves and dangly earrings, compression gloves, and an asymmetrical black punk top. From top left zigzagging to bottom right like reading, the images show muscles of a person from behind with hooks in their neck and shoulder. a vibrant yellow green and orange figure made up of bubbling mucuous and nausea. a skeleton with chains attatched to their joints. a black silhouette in a tossing ocean. a sheet ghost figure waring a mask surrounded by cartoons of grinning socializing humans with viruses. a figure wrapped in thick restraining bandages. a figure that looks like they're coated in skin burns in red orange and magenta radiating heat. lime green and purple squiggles in the torso and dilated eyes.
Hello! There's 25% off everything in my store until Sunday, using code HIATUS25 :ablobcheer:
As I'm now on hiatus, I thought it appropriate as a wee thank you to all those who've supported my work through the years!
I'll either be closing my store next week, or severely streamlining it (as you can list 5 free items on BigCartel) so it may be your last chance to grab a Clay Disarray piece for a while 🖤
Maskless healthcare workers - would you be willing to tell me WHY you don’t mask?
I’m not looking for “because I don’t have to”. I want to know why you don’t mask mirror for patients and/or CHOOSE to take precautions?
Respectful answers only please. I’m genuinely asking.
I’m working on an article about this and I feel I’ve got a good grasp on the “why” for those who DO mask - but I genuinely don’t understand those who refuse.
You’re in a profession where people pit your lives in their hands - it seems nonsensical to put them at risk. You KNOW you’re dealing with the most vulnerable among us - yet opt not to protect them.
A mask won’t harm you in any way - so what reason is there NOT to do it?
I would appreciate boosts for visibility - and there may not be many maskless HCWs on here so I also invite people to share stories of times their HCW refused to mask for them (and why - if you know).
I've been a bit quiet on the art front lately as I've been on an unofficial hiatus. I was diagnosed with #MCAS earlier this year which means I'm allergic to a whole load of stuff, and other symptoms include fatigue, chronic pain and vision/eye issues.
Meds are helping but as I use heavily pigmented clay, which ultimately leaches into the skin, I'm trying to avoid it while I focus on getting better (and I can't use gloves as I need to physically touch the material)
If you become suddenly disabled or chronically ill - your whole world shifts. It’s a harsh adjustment to move from the land of the healthy into a world of constant sickness.
You lose friends & family, healthcare gets harder to access and you face discrimination & ableism.
I’ve written extensively about the experience of accessing medical care when you’re chronically ill. The challenges, risks and psychologizing that so rarely occur when you’re non disabled.
But there’s a lot more to the experience than just accessing healthcare.
In fact - many disabled people go to great lengths to avoid medical settings. Opting instead to hold themselves together with tape and glue.
The problem is - no one teaches you how to do this. There’s no welcome guide to the world of chronic illness.
It's why online communities are vital to our survival - because patients sharing stories help others learn how to manage their conditions. Many learn more from other patients than they will ever learn from HCWs.
Patients ARE the experts in how to cope with chronic illness.
Healthcare becomes a place for diagnosis and band aids - because chronic illnesses are not well understood. They don't get the funding or support they deserve and as a result - doctors are quite limited in what they can do for us.
That doesn't mean there isn't hope. There's a myriad of things you can do for yourself to accommodate your illness, improve quality of life, lessen pain and suffering and find a supportive group of people to get you through difficult times.
Accommodating does NOT mean giving up hope of a cure or improvement - it simply means accepting your disabilities and leaning into ways to improve quality of life.
Little changes can and do make a big difference!
I think about things like learning how to pace, the benefit of a shower chair, learning to put on compression socks BEFORE getting out of bed, having a hospital go bag at my disposal & an advance directive and substitute decision maker chosen and available.
The importance of having a robust at home first aid kit and learning basic medical care to deal with injuries. How to prepare a will.
How to reduce inflammation through diet & lifestyle changes. How to make your home more accessible. How to choose the right person to be a Power of Attorney.
These are just a few examples of things that have made a difference in my own life that I did NOT learn in a healthcare setting. I learned through trial and error as well as from the patients who came before me. The people who are the experts in the conditions I struggle with.
We must support each other - because if we won't - who will?
Building a place for support is one of the main goals for The Disabled Ginger. I've done a series of posts about the hospital experience & how to make it easier ... now it's time to move on to the welcome guides.
My focus will be on mini guides for each condition I deal with - as well as broader guides about how to navigate being chronically ill, accept your disabilities and improve quality of life WITHOUT the help of the medical system.
I hope you will join me on my journey and add your own important contributions. We all arrive at our disabilities from different places - and we are all unique. Every single one of us can bring a different perspective that will likely help someone else.
If there's a topic you want to see covered, something you've learned the hard way you wish someone had taught you, or anything you want to add - let me know.
I want this guide to be accessible to everyone - regardless of where they are in their chronic illness journey. For more you can read my newsletter & send suggestions or comments my way. Happy to have them!
Image of lightbulb on a blue background with pictures of graphs, clocks and charts all around it. White text reads There's No Welcome Guide to the World of Chronic Illness - But There Should Be When you become chronically ill - you're on your own. No one teaches you how to navigate this new world, how to adapt to your new -++ circumstances or find help. What... WWW.DISABLEDGINGER.COM
Cara was bullied for masking at school and eventually stopped… only to infect her high risk mom with covid. Her mom died.
Governments & public health should be blamed for this - not Cara. But I’m sure she will feel guilt the rest of her life. This is where “you do you” leads.
It shouldn’t be up to kids to protect their high risk family members. They aren’t prepared for the amount of bullying and peer pressure they will face to de-mask. We need to be dealing with this at the institution level. Clean air in classrooms. Paid time off for sick teachers and staff. No more attendance awareness and punishing sick kids for staying home. No more “diarrhea scales” to indicate whether your child can come to school with Covid diarrhea (your kid should be home if they have diarrhea). Negative tests should be required to return to the classroom.
I lost my mom to cancer when I was 19… and it fundamentally altered my entire life. Losing your Mom at a young age is a dreadful experience - and I can’t even imagine the grief and guilt this young girl is facing.
Her life is going to be forever altered. I hope she’s wrapped up in a cocoon of support and love and that it’s made clear to her every day that she was failed by systems and institutions. We must do better. The grown ups and those in charge NEED to protect the kids so no child is ever in this position.
Lastly - don’t bully a kid who’s masking. It’s hard enough for them and you don’t know who they’re trying to protect. Leave them be or better yet - put on a mask yourself and show them some support and solidarity.
The mask ban in Nassau County, NY went into effect today. It’s a dangerous, discriminatory and highly ableist ban that makes masking a criminal act.
The police will determine who is “sick enough” to wear a mask.
Everyone else? $1000 fine and/or jail.
I’ve written about mask bans in great detail in the past - I’m strongly opposed to them. Legislators say they’re designed to deter crime - when we know a medical mask does very little to obscure identity.
The reality is there’s no evidence to suggest they will stop crime - however there’s ample proof that they will deter high risk individuals from masking in public (or from being in public at all).
Invisible illnesses and disabilities are difficult for even doctors to understand - no one is going to feel comfortable letting a police officer determine if they’re “disabled enough” to not be breaking the law.
Bans like this increase the likelihood of harassment and violence against mask wearers - because people feel emboldened by the government effectively telling them that those who mask are “bad”. We aren’t bad - we’re just trying to survive.
My heart aches for everyone who wants and needs to protect their health in places that are enacting these bans - and I can only hope that if we keep getting loud and pushing back we can stop them from spreading.
Don’t make the mistake of assuming it can’t happen where you live - these bans can (and will) be enacted in more places if there isn’t public outcry.
Medical tools should never be banned. Masks are a critical accessibility & public health tool. They help. They don’t harm.
You know what does harm? Unmitigated covid spread. Ableism. Police profiling and law enforcement overreach. Anti-mask aggression. Bad policies and the refusal to pay attention to the science of airborne spread.
Nassau County just became more unsafe for everyone. Maskers and non maskers alike. Just like North Carolina before it… they’ve sent a very clear message that vulnerable people don’t matter. Marginalized people don’t matter. Ableism is alive and well.
You should also read the powerful TeenVogue article by Alice Wong on mask bans. I was thrilled to be given the opportunity to contribute - and I appreciate Teen Vogue being willing to tackle these critical subjects: https://www.teenvogue.com/story/mask-bans-disabled-people-protest
“No Olympic athletes are going to get Long Covid! It’s been 4 years and I don’t know anyone who has Long Covid!”
Yes. You do. Many people don’t disclose their disabilities for fear of ableist backlash. Others don’t connect the dots and may not realize they have Long Covid.
The sad reality is that like many other chronic illnesses - Long Covid is poorly recognized and likely underdiagnosed. Many patients are dismissed with “anxiety” by doctors who don’t understand the nature of these conditions.
Others can’t afford to seek healthcare as they’ve already lost work/income due to being chronically ill. Some may not have safe access to healthcare due to lack of masking and clean air in hospitals. They KNOW they’re sick but can’t risk re-infection.
There’s also people who are suffering from Long Covid and don’t realize it. They either can’t connect the dots (due to denial or lack of information) or they’ve convinced themselves it’s just “aging” or “stress”.
It’s alarming how many people in their 20s & 30s are writing off very serious physical symptoms as “getting older.” You shouldn’t be too exhausted to function in your twenties. Everything shouldn’t hurt. You should be able to smell your food. You shouldn’t be sick all the time.
Then there’s those who know they have Long Covid - but choose to keep it quiet from friends and family. Ableism runs incredibly deep in our society - and when you admit to being chronically ill you may find yourself judged, ridiculed, disbelieved or abandoned.
Many chronic illnesses are invisible - you won’t KNOW someone has them unless they CHOOSE to tell you. Ppl in my life had no idea I was disabled until I began advocating for disability rights. I could hide symptoms well enough to not tip them off & I didn’t volunteer the info.
Looking back I’m embarrassed by how long it took me to publicly admit I was disabled. The fear I had about sharing it is an indictment of how cruel people can be. Everyone preaches tolerance & acceptance - but few actually practice that in real life.
There’s also an extra stigma associated with Long Covid because it forces people to think about a period in their lives they’re desperately trying to forget. It challenges the narrative that we’re “back to normal”.
I lost many friends and loved ones when they found out I was sick. Some losses were immediate and brutal - people who carelessly tossed me by the wayside because they instantly put me into the “less than” category.
Other losses were slower and more painful - because they involved false hope. They were the ones who stuck around at first - who applauded me for telling them the truth & offered help and support.
Many did help - until they stopped. They almost all stop eventually. 1/2
I’ve got a family member in remission from cancer who’s in denial about being high risk for Covid. Has had 3 infections & refuses to mask.
They recently went to the hospital for screening & to my surprise…wore one of the provided surgical masks.
Then they got sick.
Their local hospital has dropped mask mandates - but still provides complimentary surgical masks at the door. This person had just spent nearly 3 months sick with a “bad respiratory virus”… so wore the mask in the hopes of not getting sick again.
Unfortunately - they were one of the only people masked. The HCWs who performed their screening weren’t masking - and the procedure required sedation so their mask was likely removed.
Within 3 days of the procedure they had a bad cough, fever & chills.
When they told me - I asked if they would like to discuss respirators and ways to up their mask game for maximum personal protection. I pointed out that when no one else is masking - a surgical won’t protect you as well as an N95. I offered free respirators.
I knew it would be an uphill battle as this is an elderly individual who very much believes that doctors & hospitals know everything and wouldn’t possibly give them inferior protection or bad advice. If a surgical mask was being provided - that must be “good enough.”
Unfortunately it was even more difficult than I imagined to get through to them. Their response was simply “I’m never going to the hospital again - that’s where you get sick.”
I don’t necessarily disagree - hospitals can be dangerous places where the strongest bugs thrive.
But you never know when you might need the hospital. Emergencies happen. The cancer could return. A loved one could be hospitalized. Not to mention their prior 3 covid infections were NOT caught in a hospital. There ARE better tools to protect yourself.
I said “I know you’re frustrated you got sick where you went to get care - but there are ways to make it safer. I would be happy to help”.
I was told that they would prefer to live their life with joy and not think about Covid any longer.
There’s many problems with this mindset. My family member has been failed by governments and public health. They FINALLY reconsidered masking because they were fed up with being sick so often - but got sick despite masking because no one else masked & wrong mask was provided.
They were failed by the HCW’s who refused to mask around them. Failed by media and high profile public figures who insist that “masks don’t work” because they don’t know the difference between a mask and a respirator. Failed by politicians who proclaim the pandemic is over.
This person WAS reachable. After 3 infections they were fed up and genuinely didn’t want to be sick again. They trusted the hospital provided mask to keep them safe because they have always trusted doctors and medical staff. They can’t comprehend their advice might be wrong.
In their mind - they did everything right. They followed the guidelines & still caught covid. Now they’re angry and back in their denial bubble. We’ve missed an opportunity to educate & perhaps save a life - mainly due to the tidal wave of misinformation we’re up against. 1/2
I've reached a full half-century today and, let me tell you, celebrating is a little challenging when you're intolerant to alcohol and pretty much all food 😆 🥳
what the fuck do we do. theyve destroyed communication in gaza. they keep bombing. we don't even know how bad it is. if it was that bad when the world was watching. Jesus.
"In March of 2020 I was attacked on my way home from work.
The man grabbed me, shook me, coughed in my face & laughed ‘You’re sick now’
I thought it was a cruel joke. I was wrong.
I had contracted Covid & I never recovered.
I have been diagnosed with ME/CFS, POTS & MCAS.
I am mostly bed bound & barely able to manage the most basic of tasks.
I have no financial support from from family or government & no supplemental insurance.
I have been unable to work since, after over 2 years my savings have been wiped out & my hope of a spontaneous recovery has dwindled.
I’ve lost my business & my autonomy."