#mastcells — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #mastcells, aggregated by home.social.
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I think salting my food increases my reactivity. It's disappointing, since I don't have a lot of variety in my food or options for seasoning it. However, I went salt-free last night at dinner and I enjoyed it - the onions were still quite good.
Though the focus is often on the sodium in table salt, in this case I think the issue might be chloride, so switching to KCl salt substitute would not help - but perhaps I should try it as a test.
-
I think salting my food increases my reactivity. It's disappointing, since I don't have a lot of variety in my food or options for seasoning it. However, I went salt-free last night at dinner and I enjoyed it - the onions were still quite good.
Though the focus is often on the sodium in table salt, in this case I think the issue might be chloride, so switching to KCl salt substitute would not help - but perhaps I should try it as a test.
-
I think salting my food increases my reactivity. It's disappointing, since I don't have a lot of variety in my food or options for seasoning it. However, I went salt-free last night at dinner and I enjoyed it - the onions were still quite good.
Though the focus is often on the sodium in table salt, in this case I think the issue might be chloride, so switching to KCl salt substitute would not help - but perhaps I should try it as a test.
-
I think salting my food increases my reactivity. It's disappointing, since I don't have a lot of variety in my food or options for seasoning it. However, I went salt-free last night at dinner and I enjoyed it - the onions were still quite good.
Though the focus is often on the sodium in table salt, in this case I think the issue might be chloride, so switching to KCl salt substitute would not help - but perhaps I should try it as a test.
-
There was an asthma medication that worked well for me.
It was based on sodium cromoglycate / cromolyn / CAS 15826-37-6.King Pharmaceuticals stopped selling their inhalable mixes of it for the western markets.
The brand name was Intal.It appears to have gone out of fashion. I read that a Scandinavian didn't like it.
Base chemical looks to be still manufactured in China. But I don't know if it is made as an asthma drug.
It calmed #MastCells.
-
There was an asthma medication that worked well for me.
It was based on sodium cromoglycate / cromolyn / CAS 15826-37-6.King Pharmaceuticals stopped selling their inhalable mixes of it for the western markets.
The brand name was Intal.It appears to have gone out of fashion. I read that a Scandinavian didn't like it.
Base chemical looks to be still manufactured in China. But I don't know if it is made as an asthma drug.
It calmed #MastCells.
-
There was an asthma medication that worked well for me.
It was based on sodium cromoglycate / cromolyn / CAS 15826-37-6.King Pharmaceuticals stopped selling their inhalable mixes of it for the western markets.
The brand name was Intal.It appears to have gone out of fashion. I read that a Scandinavian didn't like it.
Base chemical looks to be still manufactured in China. But I don't know if it is made as an asthma drug.
It calmed #MastCells.
-
There was an asthma medication that worked well for me.
It was based on sodium cromoglycate / cromolyn / CAS 15826-37-6.King Pharmaceuticals stopped selling their inhalable mixes of it for the western markets.
The brand name was Intal.It appears to have gone out of fashion. I read that a Scandinavian didn't like it.
Base chemical looks to be still manufactured in China. But I don't know if it is made as an asthma drug.
It calmed #MastCells.
-
There was an asthma medication that worked well for me.
It was based on sodium cromoglycate / cromolyn / CAS 15826-37-6.King Pharmaceuticals stopped selling their inhalable mixes of it for the western markets.
The brand name was Intal.It appears to have gone out of fashion. I read that a Scandinavian didn't like it.
Base chemical looks to be still manufactured in China. But I don't know if it is made as an asthma drug.
It calmed #MastCells.
-
Brayden Yellman, MD | Underappreciated Co-Morbidities in ME/CFS
video uploaded Oct. 16, 2025
https://youtu.be/od0epKW19og[13:03] hydroxyurea used to treat a person with POTS and MCAS
Here's an article on the topic:
Efficacy and toxicity of hydroxyurea in mast cell activation syndrome patients refractory to standard medical therapy: retrospective case series [2022]
https://pmc.ncbi.nlm.nih.gov/articles/PMC9388361/"First used 60 years ago for chronic myeloproliferative neoplasms, HU is now standard of care in reducing the severity of sickle cell disease (SCD) (McGann and Ware 2015). In this context, it is of interest that in animal models and human subjects with SCD, medications that reduce MC activation decreased bone pain (Vincent et al. 2013, 2016). HU also inhibits replication of human immunodeficiency virus-1 (HIV-1) and has been used in therapy of cyanotic congenital heart disease (Lori and Lisziewicz 2000; Reiss et al. 2007). A theoretic explanation for effectiveness of HU in these diseases include reducing MC activity independent of anti-proliferative effects. HU could decrease activity and ability of GI mucosal MCs that capture HIV-1 and mediate trans-infection of CD4 + T cells (Jiang et al. 2015). Similarly, HU could reduce the activity of the increased numbers of chymase-containing MCs in lung tissue of congenital heart disease patients and, thereby, decrease severity of these pulmonary and cardiac diseases (Hamada et al. 1999)."
The mechanisms are probably quite complex. One facet is that hydroxyurea increases fetal hemoglobin production and RBC membrane flexibility - which could increase O2 perfusion. Hypoxia activates mast cells.
#MECFS #MCAS #POTS #DrugRepurposing #hydroxyurea #MastCells #immunology
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Brayden Yellman, MD | Underappreciated Co-Morbidities in ME/CFS
video uploaded Oct. 16, 2025
https://youtu.be/od0epKW19og[13:03] hydroxyurea used to treat a person with POTS and MCAS
Here's an article on the topic:
Efficacy and toxicity of hydroxyurea in mast cell activation syndrome patients refractory to standard medical therapy: retrospective case series [2022]
https://pmc.ncbi.nlm.nih.gov/articles/PMC9388361/"First used 60 years ago for chronic myeloproliferative neoplasms, HU is now standard of care in reducing the severity of sickle cell disease (SCD) (McGann and Ware 2015). In this context, it is of interest that in animal models and human subjects with SCD, medications that reduce MC activation decreased bone pain (Vincent et al. 2013, 2016). HU also inhibits replication of human immunodeficiency virus-1 (HIV-1) and has been used in therapy of cyanotic congenital heart disease (Lori and Lisziewicz 2000; Reiss et al. 2007). A theoretic explanation for effectiveness of HU in these diseases include reducing MC activity independent of anti-proliferative effects. HU could decrease activity and ability of GI mucosal MCs that capture HIV-1 and mediate trans-infection of CD4 + T cells (Jiang et al. 2015). Similarly, HU could reduce the activity of the increased numbers of chymase-containing MCs in lung tissue of congenital heart disease patients and, thereby, decrease severity of these pulmonary and cardiac diseases (Hamada et al. 1999)."
The mechanisms are probably quite complex. One facet is that hydroxyurea increases fetal hemoglobin production and RBC membrane flexibility - which could increase O2 perfusion. Hypoxia activates mast cells.
#MECFS #MCAS #POTS #DrugRepurposing #hydroxyurea #MastCells #immunology
-
Brayden Yellman, MD | Underappreciated Co-Morbidities in ME/CFS
video uploaded Oct. 16, 2025
https://youtu.be/od0epKW19og[13:03] hydroxyurea used to treat a person with POTS and MCAS
Here's an article on the topic:
Efficacy and toxicity of hydroxyurea in mast cell activation syndrome patients refractory to standard medical therapy: retrospective case series [2022]
https://pmc.ncbi.nlm.nih.gov/articles/PMC9388361/"First used 60 years ago for chronic myeloproliferative neoplasms, HU is now standard of care in reducing the severity of sickle cell disease (SCD) (McGann and Ware 2015). In this context, it is of interest that in animal models and human subjects with SCD, medications that reduce MC activation decreased bone pain (Vincent et al. 2013, 2016). HU also inhibits replication of human immunodeficiency virus-1 (HIV-1) and has been used in therapy of cyanotic congenital heart disease (Lori and Lisziewicz 2000; Reiss et al. 2007). A theoretic explanation for effectiveness of HU in these diseases include reducing MC activity independent of anti-proliferative effects. HU could decrease activity and ability of GI mucosal MCs that capture HIV-1 and mediate trans-infection of CD4 + T cells (Jiang et al. 2015). Similarly, HU could reduce the activity of the increased numbers of chymase-containing MCs in lung tissue of congenital heart disease patients and, thereby, decrease severity of these pulmonary and cardiac diseases (Hamada et al. 1999)."
The mechanisms are probably quite complex. One facet is that hydroxyurea increases fetal hemoglobin production and RBC membrane flexibility - which could increase O2 perfusion. Hypoxia activates mast cells.
#MECFS #MCAS #POTS #DrugRepurposing #hydroxyurea #MastCells #immunology
-
Brayden Yellman, MD | Underappreciated Co-Morbidities in ME/CFS
video uploaded Oct. 16, 2025
https://youtu.be/od0epKW19og[13:03] hydroxyurea used to treat a person with POTS and MCAS
Here's an article on the topic:
Efficacy and toxicity of hydroxyurea in mast cell activation syndrome patients refractory to standard medical therapy: retrospective case series [2022]
https://pmc.ncbi.nlm.nih.gov/articles/PMC9388361/"First used 60 years ago for chronic myeloproliferative neoplasms, HU is now standard of care in reducing the severity of sickle cell disease (SCD) (McGann and Ware 2015). In this context, it is of interest that in animal models and human subjects with SCD, medications that reduce MC activation decreased bone pain (Vincent et al. 2013, 2016). HU also inhibits replication of human immunodeficiency virus-1 (HIV-1) and has been used in therapy of cyanotic congenital heart disease (Lori and Lisziewicz 2000; Reiss et al. 2007). A theoretic explanation for effectiveness of HU in these diseases include reducing MC activity independent of anti-proliferative effects. HU could decrease activity and ability of GI mucosal MCs that capture HIV-1 and mediate trans-infection of CD4 + T cells (Jiang et al. 2015). Similarly, HU could reduce the activity of the increased numbers of chymase-containing MCs in lung tissue of congenital heart disease patients and, thereby, decrease severity of these pulmonary and cardiac diseases (Hamada et al. 1999)."
The mechanisms are probably quite complex. One facet is that hydroxyurea increases fetal hemoglobin production and RBC membrane flexibility - which could increase O2 perfusion. Hypoxia activates mast cells.
#MECFS #MCAS #POTS #DrugRepurposing #hydroxyurea #MastCells #immunology
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the big question is after we've managed to cook the whole house to tolerable formaldehyde/VOCs, how long will it take my #MCAS to stabilize?
It'll probably have been a about year of environmental exposure by the time we finish the cookouts, so I'm guessing the answer is on the longer side.
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the big question is after we've managed to cook the whole house to tolerable formaldehyde/VOCs, how long will it take my #MCAS to stabilize?
It'll probably have been a about year of environmental exposure by the time we finish the cookouts, so I'm guessing the answer is on the longer side.
-
the big question is after we've managed to cook the whole house to tolerable formaldehyde/VOCs, how long will it take my #MCAS to stabilize?
It'll probably have been a about year of environmental exposure by the time we finish the cookouts, so I'm guessing the answer is on the longer side.
-
the big question is after we've managed to cook the whole house to tolerable formaldehyde/VOCs, how long will it take my #MCAS to stabilize?
It'll probably have been a about year of environmental exposure by the time we finish the cookouts, so I'm guessing the answer is on the longer side.
-
the big question is after we've managed to cook the whole house to tolerable formaldehyde/VOCs, how long will it take my #MCAS to stabilize?
It'll probably have been a about year of environmental exposure by the time we finish the cookouts, so I'm guessing the answer is on the longer side.
-
Anyone have tips for off gassing a microwave ? Mine broke with no warning and it’s currently my only cooking method.
Im hangry, dizzy and annoyed since it wasn’t even that old.
If I can find a way to replace it, my concern is the smell and how it’ll impact my mast cells.
Usually I would leave a new appliance to sit for a week or two but this is incredibly urgent.
#mcas #mastcells #offgassing -
Anyone have tips for off gassing a microwave ? Mine broke with no warning and it’s currently my only cooking method.
Im hangry, dizzy and annoyed since it wasn’t even that old.
If I can find a way to replace it, my concern is the smell and how it’ll impact my mast cells.
Usually I would leave a new appliance to sit for a week or two but this is incredibly urgent.
#mcas #mastcells #offgassing -
Anyone have tips for off gassing a microwave ? Mine broke with no warning and it’s currently my only cooking method.
Im hangry, dizzy and annoyed since it wasn’t even that old.
If I can find a way to replace it, my concern is the smell and how it’ll impact my mast cells.
Usually I would leave a new appliance to sit for a week or two but this is incredibly urgent.
#mcas #mastcells #offgassing -
Anyone have tips for off gassing a microwave ? Mine broke with no warning and it’s currently my only cooking method.
Im hangry, dizzy and annoyed since it wasn’t even that old.
If I can find a way to replace it, my concern is the smell and how it’ll impact my mast cells.
Usually I would leave a new appliance to sit for a week or two but this is incredibly urgent.
#mcas #mastcells #offgassing -
Anyone have tips for off gassing a microwave ? Mine broke with no warning and it’s currently my only cooking method.
Im hangry, dizzy and annoyed since it wasn’t even that old.
If I can find a way to replace it, my concern is the smell and how it’ll impact my mast cells.
Usually I would leave a new appliance to sit for a week or two but this is incredibly urgent.
#mcas #mastcells #offgassing -
Article from the leading publication Life Sciences Magazine featuring masitinib and its Phase 3 principal investigator, the neurologist Patrick Vermersch https://www.byteseu.com/798060/ #ABScience #AmyotrophicLateralSclerosis #BreakthroughTreatment #EuronextParis #InflammatoryDiseases #MastCells #microglia #MultipleSclerosis #neuroinflammation #Parkinson'sDisease #PATRICKVERMERSCH #Science
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I don’t want to link to this article as it’s irresponsible but I’m begging journalists to stop cosplaying “normal” at the expense of people’s health
Don’t make a case for social drinking. Ask WHY folks aren’t drinking
MCAS is a common comorbid with Long Covid & can cause severe alcohol intolerance.
If you’re unfamiliar with MCAS, I wrote an introduction article linked 👇🏼
You don’t have to have alcohol intolerance though it is a common symptom. Mast cells can impact any part of your body & you can be allergic to something one day and not the next!
It’s a beast of a disease & hard to diagnose.
https://www.disabledginger.com/p/when-youre-allergic-to-everything
#mcas #longcovid #mastcells #COVIDisAirborne #covidisntover #sarscov2
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I don’t want to link to this article as it’s irresponsible but I’m begging journalists to stop cosplaying “normal” at the expense of people’s health
Don’t make a case for social drinking. Ask WHY folks aren’t drinking
MCAS is a common comorbid with Long Covid & can cause severe alcohol intolerance.
If you’re unfamiliar with MCAS, I wrote an introduction article linked 👇🏼
You don’t have to have alcohol intolerance though it is a common symptom. Mast cells can impact any part of your body & you can be allergic to something one day and not the next!
It’s a beast of a disease & hard to diagnose.
https://www.disabledginger.com/p/when-youre-allergic-to-everything
#mcas #longcovid #mastcells #COVIDisAirborne #covidisntover #sarscov2
-
I don’t want to link to this article as it’s irresponsible but I’m begging journalists to stop cosplaying “normal” at the expense of people’s health
Don’t make a case for social drinking. Ask WHY folks aren’t drinking
MCAS is a common comorbid with Long Covid & can cause severe alcohol intolerance.
If you’re unfamiliar with MCAS, I wrote an introduction article linked 👇🏼
You don’t have to have alcohol intolerance though it is a common symptom. Mast cells can impact any part of your body & you can be allergic to something one day and not the next!
It’s a beast of a disease & hard to diagnose.
https://www.disabledginger.com/p/when-youre-allergic-to-everything
#mcas #longcovid #mastcells #COVIDisAirborne #covidisntover #sarscov2
-
I don’t want to link to this article as it’s irresponsible but I’m begging journalists to stop cosplaying “normal” at the expense of people’s health
Don’t make a case for social drinking. Ask WHY folks aren’t drinking
MCAS is a common comorbid with Long Covid & can cause severe alcohol intolerance.
If you’re unfamiliar with MCAS, I wrote an introduction article linked 👇🏼
You don’t have to have alcohol intolerance though it is a common symptom. Mast cells can impact any part of your body & you can be allergic to something one day and not the next!
It’s a beast of a disease & hard to diagnose.
https://www.disabledginger.com/p/when-youre-allergic-to-everything
#mcas #longcovid #mastcells #COVIDisAirborne #covidisntover #sarscov2
-
I don’t want to link to this article as it’s irresponsible but I’m begging journalists to stop cosplaying “normal” at the expense of people’s health
Don’t make a case for social drinking. Ask WHY folks aren’t drinking
MCAS is a common comorbid with Long Covid & can cause severe alcohol intolerance.
If you’re unfamiliar with MCAS, I wrote an introduction article linked 👇🏼
You don’t have to have alcohol intolerance though it is a common symptom. Mast cells can impact any part of your body & you can be allergic to something one day and not the next!
It’s a beast of a disease & hard to diagnose.
https://www.disabledginger.com/p/when-youre-allergic-to-everything
#mcas #longcovid #mastcells #COVIDisAirborne #covidisntover #sarscov2
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🧠 Brain Inflammation Colloborative:
Anti-depressants don't work for 30% of people who take them.
This study might have discovered why
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🧠 Brain Inflammation Colloborative:
Anti-depressants don't work for 30% of people who take them.
This study might have discovered why
-
🧠 Brain Inflammation Colloborative:
Anti-depressants don't work for 30% of people who take them.
This study might have discovered why
-
🧠 Brain Inflammation Colloborative:
Anti-depressants don't work for 30% of people who take them.
This study might have discovered why
-
🧠 Brain Inflammation Colloborative:
Anti-depressants don't work for 30% of people who take them.
This study might have discovered why
-
Influencer Dominique Brown Dies of Food Allergy at 34
Anaphylaxis needs to be taken much more seriously than it is.
Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.
Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.
It doesn’t always involve the airway.
This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.
Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.
You should never delay medical attention
If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.
I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.
I had diarrhea & vomiting, sore throat, fever and bone pain.
I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.
The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.
My “sore throat” was actually swelling
My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.
Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.
Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.
In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.
In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)
When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.
If you’re unsure if you’re in anaphylaxis - go to ER to be certain.
Had I waited much longer my throat would have closed
Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed
If we took allergies more seriously - Dominique would still be with us
For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything
For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/
#mcas #allergies #foodallergies #airborne #anaphylactic #mastcells #epi #anaphylacticshock #chronicillness
-
Influencer Dominique Brown Dies of Food Allergy at 34
Anaphylaxis needs to be taken much more seriously than it is.
Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.
Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.
It doesn’t always involve the airway.
This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.
Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.
You should never delay medical attention
If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.
I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.
I had diarrhea & vomiting, sore throat, fever and bone pain.
I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.
The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.
My “sore throat” was actually swelling
My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.
Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.
Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.
In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.
In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)
When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.
If you’re unsure if you’re in anaphylaxis - go to ER to be certain.
Had I waited much longer my throat would have closed
Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed
If we took allergies more seriously - Dominique would still be with us
For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything
For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/
#mcas #allergies #foodallergies #airborne #anaphylactic #mastcells #epi #anaphylacticshock #chronicillness
-
Influencer Dominique Brown Dies of Food Allergy at 34
Anaphylaxis needs to be taken much more seriously than it is.
Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.
Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.
It doesn’t always involve the airway.
This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.
Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.
You should never delay medical attention
If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.
I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.
I had diarrhea & vomiting, sore throat, fever and bone pain.
I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.
The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.
My “sore throat” was actually swelling
My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.
Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.
Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.
In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.
In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)
When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.
If you’re unsure if you’re in anaphylaxis - go to ER to be certain.
Had I waited much longer my throat would have closed
Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed
If we took allergies more seriously - Dominique would still be with us
For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything
For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/
#mcas #allergies #foodallergies #airborne #anaphylactic #mastcells #epi #anaphylacticshock #chronicillness
-
Influencer Dominique Brown Dies of Food Allergy at 34
Anaphylaxis needs to be taken much more seriously than it is.
Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.
Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.
It doesn’t always involve the airway.
This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.
Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.
You should never delay medical attention
If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.
I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.
I had diarrhea & vomiting, sore throat, fever and bone pain.
I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.
The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.
My “sore throat” was actually swelling
My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.
Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.
Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.
In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.
In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)
When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.
If you’re unsure if you’re in anaphylaxis - go to ER to be certain.
Had I waited much longer my throat would have closed
Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed
If we took allergies more seriously - Dominique would still be with us
For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything
For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/
#mcas #allergies #foodallergies #airborne #anaphylactic #mastcells #epi #anaphylacticshock #chronicillness
-
Influencer Dominique Brown Dies of Food Allergy at 34
Anaphylaxis needs to be taken much more seriously than it is.
Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.
Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.
It doesn’t always involve the airway.
This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.
Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.
You should never delay medical attention
If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.
I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.
I had diarrhea & vomiting, sore throat, fever and bone pain.
I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.
The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.
My “sore throat” was actually swelling
My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.
Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.
Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.
In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.
In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)
When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.
If you’re unsure if you’re in anaphylaxis - go to ER to be certain.
Had I waited much longer my throat would have closed
Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed
If we took allergies more seriously - Dominique would still be with us
For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything
For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/
#mcas #allergies #foodallergies #airborne #anaphylactic #mastcells #epi #anaphylacticshock #chronicillness
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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
-
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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At ER with a POTS flare - heart rate is 180 at triage.
Nurse: “Are you fighting with your boyfriend sweetie?”
Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”
Doctor: “Single? At your age? How come? You don’t want to be married?”
This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.
I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.
There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.
Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?
It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.
POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.
That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.
Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.
We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.
The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.
I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.
Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.
POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.
I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#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 #mastcells #DysautonomiaAwarenessMonth
-
At ER with a POTS flare - heart rate is 180 at triage.
Nurse: “Are you fighting with your boyfriend sweetie?”
Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”
Doctor: “Single? At your age? How come? You don’t want to be married?”
This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.
I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.
There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.
Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?
It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.
POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.
That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.
Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.
We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.
The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.
I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.
Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.
POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.
I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#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 #mastcells #DysautonomiaAwarenessMonth
-
At ER with a POTS flare - heart rate is 180 at triage.
Nurse: “Are you fighting with your boyfriend sweetie?”
Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”
Doctor: “Single? At your age? How come? You don’t want to be married?”
This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.
I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.
There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.
Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?
It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.
POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.
That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.
Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.
We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.
The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.
I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.
Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.
POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.
I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#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 #mastcells #DysautonomiaAwarenessMonth
-
At ER with a POTS flare - heart rate is 180 at triage.
Nurse: “Are you fighting with your boyfriend sweetie?”
Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”
Doctor: “Single? At your age? How come? You don’t want to be married?”
This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.
I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.
There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.
Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?
It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.
POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.
That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.
Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.
We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.
The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.
I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.
Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.
POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.
I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#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 #mastcells #DysautonomiaAwarenessMonth
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At ER with a POTS flare - heart rate is 180 at triage.
Nurse: “Are you fighting with your boyfriend sweetie?”
Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”
Doctor: “Single? At your age? How come? You don’t want to be married?”
This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.
I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.
There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.
Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?
It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.
POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.
That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.
Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.
We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.
The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.
I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.
Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.
POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.
I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#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 #mastcells #DysautonomiaAwarenessMonth
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Because of my POTS - I find it very difficult to spend time in the kitchen. Standing in general is difficult - but that’s compounded in a big way by the heat and smells generated by cooking.
Fainting while cooking is far more dangerous than fainting in most other scenarios (with the exception of the shower) and I’ve had a few close calls.
One day I was roasting sweet potato in my oven and when I opened the oven door to pull out the baking tray - I lost consciousness. I came to with the oven door still open, the apartment was a sauna and the sweet potato wedges were all over me and the floor.
It’s a miracle I wasn’t badly burned - though my food was well and truly ruined 😂.
Needless to say I do most cooking in my microwave now - or rely on carers to do my food prep for me.
Still - I found I needed to do something to help my brain not associate kitchen with danger. I had to change the narrative somehow.
So I got a high stool that I can sit on and still reach the counter - and I created a little “inspiration corner” that’s visible from all parts of my kitchen.
Two signs with quotes that make me smile - and my favourite New York Grand Central Terminal clock (so that I always know what time it is!)
#pots #dysautonomia #chronicillness #spoonie #longcovid #mcas #mastcells #mecfs #covidisairborne #CovidIsNotOver #disability #ableism #disabilityrights #decor #fainting