#mastocytosis — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #mastocytosis, aggregated by home.social.
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Y’all know that mast cells are immune cells?
And mast cell disorders like #MCAS #Mastocytosis (via Long Covid, other chronic infections and immune events, EDS etc) are *immune cell disorders*
“Covid doesn’t cause immune damage” people, we can’t spell it out more easily for you
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Symptom: Mast Cell Itching
https://www.illmarks.com/symptom-mast-cell-itching/
#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs
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Symptom: Mast Cell Itching
https://www.illmarks.com/symptom-mast-cell-itching/
#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs
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Symptom: Mast Cell Itching
https://www.illmarks.com/symptom-mast-cell-itching/
#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs
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Symptom: Mast Cell Itching
https://www.illmarks.com/symptom-mast-cell-itching/
#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs
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Symptom: Mast Cell Itching
https://www.illmarks.com/symptom-mast-cell-itching/
#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs
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I always feel like shit in the fall when the weather starts changing but I've never had it this bad... Usually I can power through but this year that's been a struggle.
Is anyone else experiencing a difference this year?
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Mast cell disorder patients! If you need financial help, apply for a Super T’s Mast Cell Foundation grant! I was selected in 2024.
Apply on supertmastcell.org. Last day to apply is October 31! Any questions, email [email protected].
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CW: emetophobes avoid: gross illustration art!
Symptom: Chemo-induced nausea & vomiting.
https://www.illmarks.com/symptom-chemo-induced-nausea-vomiting/
#anatomy #bodyHorror #bodyMapping #chronicIllness #emetophobia #gross #horrorArt #mastCell #mastCellActivationSyndrome #mastocytosis #mcas #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt
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2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
#art #bodyHorror #bodyMapping #chemo #chronicIllness #chronicIllnessArt #disabilityArt #gleevec #glivec #imatinib #invisibleDisabilities #invisibleIllness #invisibleIllnesses #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastocytosis #meCfs #mecfs #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt #tki
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2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
#art #bodyHorror #bodyMapping #chemo #chronicIllness #chronicIllnessArt #disabilityArt #gleevec #glivec #imatinib #invisibleDisabilities #invisibleIllness #invisibleIllnesses #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastocytosis #meCfs #mecfs #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt #tki
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2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
#art #bodyHorror #bodyMapping #chemo #chronicIllness #chronicIllnessArt #disabilityArt #gleevec #glivec #imatinib #invisibleDisabilities #invisibleIllness #invisibleIllnesses #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastocytosis #meCfs #mecfs #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt #tki
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2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
#art #bodyHorror #bodyMapping #chemo #chronicIllness #chronicIllnessArt #disabilityArt #gleevec #glivec #imatinib #invisibleDisabilities #invisibleIllness #invisibleIllnesses #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastocytosis #meCfs #mecfs #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt #tki
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2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
#art #bodyHorror #bodyMapping #chemo #chronicIllness #chronicIllnessArt #disabilityArt #gleevec #glivec #imatinib #invisibleDisabilities #invisibleIllness #invisibleIllnesses #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastocytosis #meCfs #mecfs #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt #tki
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“Recent data suggest therapy with KIT-targeting drugs may lead to partial or even complete eradication of the [mast cell] lineage in patients with MC diseases. Some TKIs can also suppress IgE-dependent activation of MCs and basophils.” 👀 I’m listening! #MCAS #MCAD #Mastocytosis https://t.co/rxJCHkFSrS
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“Recent data suggest therapy with KIT-targeting drugs may lead to partial or even complete eradication of the [mast cell] lineage in patients with MC diseases. Some TKIs can also suppress IgE-dependent activation of MCs and basophils.” 👀 I’m listening! #MCAS #MCAD #Mastocytosis https://t.co/rxJCHkFSrS
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I don’t know how much it’s for yet, Super T’s Mast Cell Foundation wants it to be a surprise
If you have a mast cell disorder like #MCAS #Mastocytosis #HaT, consider applying for a grant in fall 2025 if you need help
Everyone else, please donate so more patients get help! https://supertmastcell.org/donate/?fbclid=IwZXh0bgNhZW0CMTEAAR0d_t0cIfHDdRUs4Ifu7DA9VF4oueqEG8mMegU9b0AaYAWL9ampQwNCFfw_aem_TSjUIJ_cLHjsVRUedVB5xg
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My Ko-Fi supporters want to know bout my health journey! I'm currently doing pretty well given how bad my health deteriorated recently. I got my diagnosed if #hEDS recently, and likely have #MCAS or #Mastocytosis with #HistimineIntolerance. ko-fi.com/post/Monthly...
Monthly Health Update December -
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
1/2
#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
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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
1/2
#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
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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
1/2
#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
-
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
1/2
#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
-
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
1/2
#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
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The Mast Cell Society updated its Patient Assistance Programs page, check it out https://tmsforacure.org/patient-assistance/
Included: medication copay cards, medical care grants, care travel and lodging grants, rare disease financial assistance library, scholarships for disabled students #MCAS #mastocytosis #HaT
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CW: Heart failure, health
So my youngest sibling was rushed into hospital a fortnight ago with heart failure. Their heart stopped twice, once for 20 seconds. It’s all as a result of their lifetime condition, #Mastocytosis. Doctors are debating whether giving a pacemaker to a 19 year old is a good idea, and my poor sibling is understandably deeply anxious.
Text to my mum last night, “Does that mean I died?”
This is a little scary.