#communitycare — Public Fediverse posts

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#HearttoHeart #HearttoHeartCampaign #SewingHope #HandmadeHearts #HeartsForHope #YouMatter #MentalHealthSupport #CommunityCare #CompassionInAction #ymhc

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#HearttoHeart #HearttoHeartCampaign #SewingHope #HandmadeHearts #HeartsForHope #YouMatter #MentalHealthSupport #CommunityCare #CompassionInAction #ymhc

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#HearttoHeart #HearttoHeartCampaign #SewingHope #HandmadeHearts #HeartsForHope #YouMatter #MentalHealthSupport #CommunityCare #ymhc #makehopehappen

RE: https://lgbtqia.space/@aceofcosmicspace/117226113967982260

BOOST FOR REACH PLEASE:

Posted on my SFW. I need to prepare for my upcoming surgery and could use a little help please for transport, meds, and meals, as I'm disabled and under the poverty line. Please boost and help where you can. I appreciate you all♥️(yes, I'm nervous about the next surgery, but determined😁💪🏻)

#surgrry #mutualaid #determined #care #love #hope #fediverse #friends #communitycare #thankyou #grateful

RE: https://lgbtqia.space/@aceofcosmicspace/117226113967982260

BOOST FOR REACH PLEASE:

Posted on my SFW. I need to prepare for my upcoming surgery and could use a little help please for transport, meds, and meals, as I'm disabled and under the poverty line. Please boost and help where you can. I appreciate you all♥️(yes, I'm nervous about the next surgery, but determined😁💪🏻)

#surgrry #mutualaid #determined #care #love #hope #fediverse #friends #communitycare #thankyou #grateful

RE: https://lgbtqia.space/@aceofcosmicspace/117226113967982260

BOOST FOR REACH PLEASE:

Posted on my SFW. I need to prepare for my upcoming surgery and could use a little help please for transport, meds, and meals, as I'm disabled and under the poverty line. Please boost and help where you can. I appreciate you all♥️(yes, I'm nervous about the next surgery, but determined😁💪🏻)

#surgrry #mutualaid #determined #care #love #hope #fediverse #friends #communitycare #thankyou #grateful

RE: https://lgbtqia.space/@aceofcosmicspace/117226113967982260

BOOST FOR REACH PLEASE:

Posted on my SFW. I need to prepare for my upcoming surgery and could use a little help please for transport, meds, and meals, as I'm disabled and under the poverty line. Please boost and help where you can. I appreciate you all♥️(yes, I'm nervous about the next surgery, but determined😁💪🏻)

#surgrry #mutualaid #determined #care #love #hope #fediverse #friends #communitycare #thankyou #grateful

RE: https://lgbtqia.space/@aceofcosmicspace/117226113967982260

BOOST FOR REACH PLEASE:

Posted on my SFW. I need to prepare for my upcoming surgery and could use a little help please for transport, meds, and meals, as I'm disabled and under the poverty line. Please boost and help where you can. I appreciate you all♥️(yes, I'm nervous about the next surgery, but determined😁💪🏻)

#surgrry #mutualaid #determined #care #love #hope #fediverse #friends #communitycare #thankyou #grateful

YMHC Heart-to-Heart Registry. Sign up to make hearts: https://ymhc.me/hearts
#HearttoHeart #HearttoHeartCampaign #SewingHope #HandmadeHearts #HeartsForHope #YouMatter #MentalHealthSupport #CommunityCare #CompassionInAction #ymhc

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#HearttoHeart #HearttoHeartCampaign #SewingHope #HandmadeHearts #HeartsForHope #YouMatter #MentalHealthSupport #CommunityCare #CompassionInAction #ymhc

YMHC Heart-to-Heart Registry. Sign up to make hearts: https://ymhc.me/hearts
#HearttoHeart #HearttoHeartCampaign #SewingHope #HandmadeHearts #HeartsForHope #YouMatter #MentalHealthSupport #CommunityCare #CompassionInAction #ymhc

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#HearttoHeart #HearttoHeartCampaign #SewingHope #HandmadeHearts #HeartsForHope #YouMatter #MentalHealthSupport #CommunityCare #CompassionInAction #ymhc

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region—who show up with compassion and consistency.

📣 Support your local nonprofits. Their work is only possible with community partners, donors, and volunteers. Every bit counts.

#recovery #odaat #Homelessness #Boston #northshorema #hope #Donuts #honeydew #mentalhealth #shelter #housing #nonprofits #hunger #volunteering #communitycare

This is such a wonderful idea.
Abortion care is health care, and #spiritualcare is equally as important for many.

https://www.fireweedproject.ca/

#ReproductiveJustice
#IndigenousHealth
#AbortionCare
#CommunityCare
#CulturallySafeCare
#healthcare
#indigenous
#firstnations #fireweedproject

When I was first diagnosed with MCAS I thought “a condition I can control!”

I genuinely believed that since there were clear & obvious triggers - I could put in the work, overhaul my life and be free of attacks.

When a patient plans - mast cells laugh.

I threw myself into research trying to learn how to adopt a low histamine diet, clean my air and change my body care and cleaning products.

I (falsely) assumed that if I made enough changes - sacrificed HARD enough - I wouldn’t have to deal with flare ups.

It was exhausting. Many of the changes DID help. A low histamine diet, cleaner air, a proper med and supplement schedule and non toxic cleaning products all helped to reduce my overall “bucket” so that my symptoms were less severe.

The problem was - I continued having attacks. From minor attacks to full blown anaphylaxis - no matter how much work I put in the attacks didn’t stop.

It was incredibly frustrating - and I began tracking everything I ate, used or did in an effort to find patterns.

In the end I realized that sometimes - there are no answers. “Putting in the work” doesn’t guarantee you won’t have attacks.

It’s a help - and we should do whatever we can to minimize our symptoms - but chronic illness (and especially MCAS) doesn’t care about your plans.

I had to learn to let go. Constantly blaming myself, over analyzing every situation and trying to nail down exact triggers was exhausting me.

It wasn’t helping my physical health and was destroying my mental health

At a certain point - we have to accept that chronic illness can be wildly unpredictable - and flares are NOT our fault.

Setbacks happen - and the best thing you can do is give yourself grace and remember that the pain WILL pass.

This applies to Covid as well. I see far too many people who are covid cautious being blamed for their infections. Being grilled as to what their exact precautions were as people try and exploit a perceived weakness somewhere.

This isn’t helping.

If you’re masking and doing everything you can do to avoid covid - you’re doing a great job. If you got infected anyways - that’s the fault of our institutions and governments who’ve allowed the virus to run rampant and encouraged people NOT to take precautions

Just like we have to let go of trying to find every possible trigger for our chronic illness - we have to let go of the blame when people get infected with Covid.

Blame, shame and guilt aren’t helping anyone - and they aren’t good for your health.

To be clear - “letting go” doesn’t have to mean giving up. It doesn’t mean you stop trying to improve your health or stop mitigating for COVID.

It simply means you stop fighting the reality that you’re sick. You lean IN to the conditions and try and find ways to accommodate

It’s a difficult thing to do. I’m still having to work at it every single day. But it’s worth making the effort.

Society, HCWs and even friends & family can be cruel to those with chronic illness - we don’t need to be cruel to ourselves.

Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.

This post explains how I learned to be kinder & gentler with myself and accept that setbacks WILL happen and they’re not my fault:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

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#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #MastCellActivationSyndrome #mastcells #histamine #lowhistaminediet #mastocytosis #anaphylaxis

PSA for Long Covid folks experiencing mast cell issues for the first time - anaphylaxis is not JUST airway issues. Anaphylaxis can impact all major body symptoms & you can be having an attack with NO skin or airway involvement.

My anaphylaxis is almost always cardiac & GI.

I find that many people (including some HCWs) still associate anaphylaxis with throat closing and hives/rashes. While that may be the typical presentation (especially for food allergies)… patients with MCAS are anything but typical.

My very first anaphylaxis experience started with a sore throat & flushing but no noticeable breathing difficulties. I had terrible diarrhea & stomach cramps, a very low pulse & was pale and woozy. I chalked it up to a bug and tried to rest it off.

I didn’t go to the ER until more than 48 hours later when the sore throat had become so severe I could no longer swallow fluids. At that point I still thought it was strep or tonsillitis & was shocked when triage whisked me into a code room after administering Epi

It turns out I had been in anaphylaxis the whole time - but my body exhibited the cardiac and GI symptoms first. The airway symptoms developed slowly so my body had time to adjust and I didn’t realize how swollen my airway was.

The chart I posted shows all the different ways it can manifest - and it’s important to be educated on the various presentations so you recognize anaphylaxis & can get immediate treatment. Even uterine cramps can be a sign. If respiratory involvement is absent but two other systems are impacted - that meets criteria for anaphylaxis.

I’ve been dealing with MCAS for years and I’m still learning all my triggers as well as the strange early warning signs my body gives me. Lately it’s been a hoarse voice, raised rash on shoulder & severe vomiting. Teeth chattering, violent shaking & slurred speech also common

I share my experiences in an attempt to educate people on the varied nature of MCAS attacks and the fact that anaphylaxis is not always sudden or obvious. Once identified it’s important to treat & be monitored for rebound or biphasic reactions.

Lastly if you have significant cardiac involvement with your MCAS reactions - it’s important to be aware of a relatively rare condition called Kounis syndrome. It’s an acute coronary syndrome caused my mast cells/allergic reactions.

It can cause spasms in the arteries of the heart and possible breaking off of plaques leading to coronary artery blockage. While considered rare - in recent years there’s been speculation it’s more common & simply under diagnosed and/or misdiagnosed.

I keep copies of all my EKG rhythm strips when I need paramedics or the ER for my MCAS reactions. It can be critically important to have them reviewed by an MCAS savvy cardiologist.

If ever in doubt - seek medical attention. Speak to your medical team about carrying an Epi pen and go to hospital if you have to use it. Even if you feel better - rebound reactions can be incredibly severe.

While MCAS can be an absolute beast to manage - medications, lifestyle and dietary changes can make a tremendous difference in quality of life. Patient support groups are an excellent resource for teaching how to identify & and eliminate triggers.

They can also provide emotional support which is critical as MCAS can be isolating & lonely. Remember you’re not alone & reactions aren’t your fault. Even the most careful patient can end up in anaphylaxis & we must give ourselves grace. It’s not our fault - it’s the disease.

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill #LongCOVID

#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine

Heard a quote today that really resonated (unsure who to attribute to)

“If you only have 10% to give and you gave 10% then you’ve given 100%”

For those of us with chronic illness this is so important to remember. Our 100% looks different than other people and that’s OK!

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill

#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine #LongCovid

This time of year is awful for MCAS & POTS patients. While everyone else enjoys the end of a long cold winter - pollen & grasses fill our histamine bucket and warmer weather strains our hearts.

I know it’s Spring when I start having middle of night attacks… my sleep schedule falls apart and I find myself reaching for coping tools. Here’s how I handle those nocturnal attacks.

First of all MCAS isn’t limited to “just” histamine. These pesky cells contain hundreds of mediators that can wreak havoc in your body. Histamine just happens to be the one that’s most well known. It also happens to be the one that loves nighttime parties.

When too much histamine builds up in the body & the brain… it gets released in the early hours of the morning. Many people may never notice this occur - but if you’ve got MCAS you’re likely more than familiar with the aggressive & rude wake up.

It’s not uncommon to wake up tachycardic and feeling panicked - covered in sweat, wheezy, itchy and nauseous. This happened to me every night during spring for YEARS before I made the connection. Now that I know - there’s some things I do to make it slightly more tolerable.

First - natural fibres in bed! I really can’t stress this enough. You want your pajamas and bedding to be a material that breathes. Cotton, bamboo and linen are all good options. A zippered mattress cover that’s designed for allergies will help as well.

When I know I’m at my worst - I sleep with a towel underneath me in bed and a clean towel on the opposite side. I also keep a change of clothes in bed with me. This way if I wake up soaked and I’m too dizzy to get up - I can change in bed & roll onto the dry towel.

Don’t neglect your pillow either! Having a pillow cover that’s designed to keep dust & allergens out will help - and I wash my pillowcases every few days. I also recommend having an air purifier in the bedroom with the best CADR you can get (clean air delivery rate).

You want as much filtered air being circulated while you’re sleeping as possible. I avoided this for the longest time and was really surprised at the difference it made when I finally put a HEPA in my bedroom.

Be prepared for hydration needs! I keep a bottle of water on my nightstand & another (sealed) bottle in bed. When I have a particularly bad attack my already low BP drops further - making sitting up dangerous. A water bottle within reach helps me avoid fainting.

Water is key to flushing out histamine and other mediators - so if possible I drink 500ml before I attempt to go back to bed. I also keep rescue meds on the nightstand - but I make sure they’re portioned out in the exact “safe” dose. This avoids any groggy dosing errors.

If you’re reaching for the Benadryl (as many of us do) be aware of the Benadryl rebound. While it’s a very effective antihistamine for an MCAS flare - it suppresses the histamine without actually removing it from your body. When it wears off the flare CAN come raging back

If I resort to Benadryl I increase my water intake as much as I can tolerate to offset the rebound - but ideally I try to control reactions with a mast cell stabilizer versus an antihistamine. Those are meds like Cromolyn & Ketotifen.

Depending on the flare - I can wake up burning hot or freezing cold. I keep an extra blanket on opposite side of bed for when I’m cold - and an ice pack wrapped in a cooling buff so it’s still frozen if I’m hot. Ice pack to the back of the neck can also help break tachycardia

If I’m extremely tachycardic and the ice pack doesn’t work - I flip myself around in bed and put my legs up the wall/headboard. This helps calm the autonomic nervous system. Deep belly breaths while in this position are very soothing - just don’t fall asleep that way!

Mast cells love to wreak havoc on the bladder & bowels - and unfortunately more often than not an emergency trip to the bathroom ends up being needed. If possible I drink water BEFORE getting up & do as many ankle pumps as I can tolerate. This staves off fainting 50% of time

If you live alone or your bathroom is far from bed… consider a bedside commode. It’s not something we LIKE to think about but it reduces the risk of falls & its easier to get back to sleep if you’re not struggling to walk to the bathroom. Accessibility tools are our friends! 1/2

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill

#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine

Canadian here so bear with me because I don’t fully understand US gun laws (nor do I understand their attachment TO guns).

What I do know is whenever there’s a mass shooting someone will bring up stricter gun control and the Right wing gun lovers shout “my freedom! You can’t take away my right to protect myself!”

Yet we are seeing a U.S. State attempt to criminalize the wearing of medical masks in all public spaces. Something that is quite literally “personal protective tool”. Why doesn’t our freedom to protect ourselves from infection as much as their freedom to carry a gun?

I can’t see any scenario where someone else would be harmed by an N95 - the same is NOT true for any gun. Yet one is being criminalized and the other isn’t.

I sincerely hope we start hearing more people speak out against criminalizing medical masks if for no other reason than the violation of freedom and bodily autonomy. You don’t have to care about Covid to understand that some people need to wear masks.

It is a very sad example of the state of the world when a person can walk into a pharmacy or grocery store with a gun - but not wearing a medical respirator DURING A PANDEMIC

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics #MaskBans

I’m immune compromised - would you mask for me?

“No! Stay home forever!”

I can’t stay home I need food - can I order in?

“Do it yourself! It’s entitled and privileged to get delivery! SURELY you can use a microwave!”

I’ve got a family member to help me.

“Don’t be a burden!”

I need the hospital so I’m going to wear a respirator.

“Haha that’s illegal now!”

This is genuinely how it feels to be a high risk disabled person in society right now. It’s not enough that the loudest voices won and governments basically dismantled all covid protections, reporting tools, testing etc… they still scream at us for trying to protect ourselves. We stay home and rely on gig economy & delivery services and we’re exploiting others. We ask people to mask and we’re tyrants. We try to mask ourselves and we’re mocked and teased and now at least one US State is actively trying to criminalize medical masks.

Yet whenever I bring up eugenics I’m shouted down and told I’m exaggerating - despite the fact that a large portion of society very clearly doesn’t want disabled people to survive (and they certainly won’t lift a finger to help us).

It feels terribly bleak and I wish the “my freedom” crowd would recognize that disabled people are the canaries in the coal mine. Governments won’t stop with us. We’re just unlucky enough to be first.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics #MaskBan

A few months ago a friend told me I needed to stop “being a burden” on those around me & find somewhere with round the clock care to live & accommodate my disabilities. Knowing no such place exists for someone like me - I gave them a challenge.

I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.

We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.

Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.

The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.

And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?

In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.

Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.

Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.

I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?

Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.

This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.

Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics