Lmst

2025_5_6 Eternal Suffering of the Mast Cell

https://www.illmarks.com/2025_5_6-eternal-suffering-of-the-mast-cell/

#art #autoimmune #bodyHorror #chronicIllness #longCovid #mastCell #mastCellActivationSyndrome #mastcell #mcas #MillionsMissing #pwLC #pwme

the figure on the manila bookmark's body is coated in clumps of repeated cyan lines like scratch marks. there are the most scratch marks on the head, face, and neck. Surrounding the body are what look like green angular squiggles, but are upon closer inspection the word "itch" repeated all over.

Health speculation…

I'm still waiting for further appointments and more blood work (and possibly more tests after that). My doctor hasn't said so specifically, but she seems to be looking in the direction of something like #MCAS (#MastCellActivationSyndrome) and my thoughts have been leaning that way too. I had already considered this as a possibility because one of my symptoms is intensely itchy skin. There is a *lot* of overlap between MCAS and #dysautonomia and they can often exist as comorbidities. There are some aspects of what's going on with me that could suggest both, although it's impossible to say anything for sure without specific testing. There are also other things too that can look like MCAS... and I'm really not trying to actually diagnose myself here, I just really, really want to understand what's wrong. I'm so worn out from this and, at times, I've been really scared.

I have been taking a couple of different antihistamines and they were helping the itching and shortness of breath as well as waking up with intense anxiety. But in order to do a blood draw tomorrow, I've had to stop taking these for a few days and last night and today I've really felt the difference and it's been horribly uncomfortable.

I got the results back from my heart monitor and it showed instances of sometimes very high tachycardia, but I haven't spoken to anyone about this yet so I don't know how serious it is. All my doctor has said is that I need to see a cardiologist and that appointment is later this month and I'll see my primary doctor a little before that.

#ChronicIllness

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

the figure on the manila bookmark has bright pink and teal-edged abstract siwlrs and angles filling their abdomen, and rising up into their face. Behind them, in the same pink with teal perspective edging is a biohazard symbol, arranged so the top circle is like a halo to the figure, and the two lower circles are like wings. Their body also has dark dark yellow (so dark it's almost black) angled shapes around the body in different areas, especially joints. These ground and contrast the vibrant biohazard within and without the figure.

2025-1-19 MCAS trigger: allium smell

https://www.illmarks.com/2025-1-19-mcas-trigger-allium-smell/

#bodyHorror #chronicIllness #histamineBucket #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mcas #medart #medicalArt #MillionsMissing #SciArt #scienceArt

a body with a respiratory system is coated in pink dots like hives. Their eyes nose, sinuses, wind pipe, and lungs are visible, but the rest of them is a chaos of pink dots. Currounting them are dark drawings of onion, garlic, and shallot, each letting off toxic blue-brown wafts which go up the figure's nose.

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

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

When a patient plans - mast cells laugh.

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

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

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

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

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

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

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

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

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

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

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

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

This isn’t helping.

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

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

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

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

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

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

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

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

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

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

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

Interested in this study on #MastCellActivationSyndrome #MCAS and varied the symptoms are.

A number of participants ended up with a diagnosis of #hEDS +/- #POTS all of which is more common in #Autistic people.

Pity the sample size so small though.

"Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to Mast-Cell-Directed Treatment: A Case Series" - PMC
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10672129/?sfnsn=wa

MCAS (particularly when combined with being autistic) gives you the ability to smell *everything* which sounds like a superpower, but I can assure you is absolutely vile.

Thankfully my new meds seem to be really helping. Ian opened a new packet of lightly scented dog poo bags last night and I didn't immediately eject them from the house, so I'm calling this progress! :ablobcheer:

#MCAS #MastCellActivationSyndrome #ActuallyAutistic #Autistic

I've been needing my anti-nausea meds more frequently recently, which I assume is just MCAS kicking up because spring allergies?

#MCAS #MastCellActivationSyndrome

UK folks! I'd be really grateful if you could take a moment to sign this petition - Fund increased care and support for people with #MastCellActivationSyndrome.

I've been trying to get a diagnosis for #MCAS but the NHS doesn't really recognise it as a condition. Many MCAS patients are misdiagnosed as a result meaning that we're not getting appropriate care or treatment.

Thank you! 🧡

https://petition.parliament.uk/petitions/652842?fbclid=IwAR0QD-spKrj-UmNGFRXwZFhxKgEe24qA4jmmCStPX7JOrhEtEI2IK2hYSQ8

#petition #help

MCAS Symptoms

MCAS symptoms are often unpleasant, debilitating and wide- ranging - affecting different parts of the body at the same time. MCAS symptoms often come and go and their severity can fluctuate over time. In some cases, people may experience mild symptoms for a long time before seeing a sudden increase in the frequency or severity of their symptoms. Sometimes there is an incident which triggers this sudden increase in symptoms - such as a severe infection or a medical procedure or operation. The extent of symptoms for people living with MCAS can be substantial. The potential severity of symptoms along with the unpredictability of triggers can mean that the everyday lives of people with MCAS, their families and carers are considerably impacted.

Anyone here have #MastCellActivationSyndrome ?

Wondering if tears are a common trigger? Someone close to me undergoing investigation for #MCAS and eye swelled up from crying and got hives under eye.

This is an excellent BBC article on #MastCellActivationSyndrome and the complete lack of knowledge surrounding this illness.

#MCAS can be triggered by Covid, but I've had debilitating symptoms for over 5 years and the flare I'm currently in is awful (I'm down to around 10 safe foods and any exertion makes me breathless)

I've a catch-up with my GP next week but I'm not hopeful of a positive outcome. Diagnosis through the NHS seems impossible. :ablobrollingeyes:

https://www.bbc.co.uk/news/uk-england-london-66998448

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“Our coverage spans related infection-associated chronic conditions such as #myalgicencephalomyelitis, #dysautonomia, #mastcellactivationsyndrome, & more.Unlike many outlets, we continue to report on the impact of the ongoing #Covid19 pandemic. No denial, minimizing, or gaslighting here”

@longcovid #LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid @covid19 #COVIDー19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #CovidBrain @auscovid19

Updated today: https://gofund.me/7b775651. We would be very grateful for a share. The medical bills on our credit card (ALL the bills) are getting scarier. #traumaticbraininjury #tbi #pentad #septad #mcas #mastcellactivationsyndrome #pots #posturalorthostatictachycardiasyndrome #occulttetheredcord #abdominalvascularcompressions #abdominalvascularcompressionsyndrome #NEISvoid

A (currently) flaming red-headed teen girl rests curled around her emotional-support pup, Oona on patterned blankets of red plaid and blue and beige.

I’ve finally written a long list of my symptoms for the Doctors on Monday.

I’ve been passed from pillar to post over the last five years and it’s exhausting. I’ve a strong suspicion I have Mast Cell Activation Syndrome but I suspect getting a diagnosis in the UK is pretty tricky.

Has anyone managed successfully to get a diagnosis through the #NHS, as I’m not sure which dept I need to be referred to?

#MCAS #MastCellActivationSyndrome

New update this morn: https://gofund.me/7b775651
#TraumaticBrainInjury #MastCellActivationSyndrome #VascularCompression #DisabilityAidRequest #MutualAidRequest #NEISVoid