We know that my right side is the side that is deteriorating faster. Shoulder, hand, hip, knee, foot and ankle. All subluxating more frequently or in the case of the shoulder, permanently. Right ankle turned in. But my left hip and shoulder are getting worse. Even before the fragrance hit today, I was struggling even more than usual since I did not seem to have a strong or reliable side.
Then the fragrance hit. It's been an absolute nightmare. I'm being assaulted and holding on by a thread and nearly choking while eating as I fade in and out with my head exploding and body going more limp. Vertigo. High risk of collapse sitting and standing. High injury risk. Too weak to hold myself up properly. And so many hours ahead to get worse...which it will. Trigeminals 🤕. How to hold my head up when it keeps falling. Full passing out possible. Neck injuries already in progress. Trying for support. Much better with the respirator on and the window wide open, now with a fan blowing in. But obviously still devastating me. But I have no idea how I will take my respirator off again in order to brush my teeth or eat or nap. Or pass out fully, of course. Anyone can detect the fragrance in the bathroom today. Stronger. Not faint smells. Although bedroom level detection is still a specialty of mine.
But what's new:
Next stage of decline and new injuries. No longer capable of lowering myself onto the commode. I started but then collapsed. I was shaky, and then everything just buckled. Almost no arm strength to support the failing leg strength. Severe pain in hands and knees as I tried to lower before they gave out. And I landed way off center. Right butt bone/cheek on the seat. Left in the hole. Bad jolt as I landed and then no way to fix the position, so I had to stay and go in that position. Couldn't reach to wipe well due to being so off center. Hips are fucked. And I have no other strategy. This is the only technique. Wait to buckle. Pain unbearable. As if it were bearable before.
Gustavo and I made a demonstration video in the evening to demonstrate his lowering technique to get me on the commode. Even though it was late, and he was exhausted. 🙏🏻 We simply can't trust me to lower without collapsing. My knees buckle as soon as I bend them while weight bearing now. There is no more unsecured movement possible. Just making the video showed just how injured I really am, because the pain was so much more severe.
Next day:
I smelled the fragrance all night. Low level but not gone. No nap yesterday and crappy sleep. So injured. Such high pain in body and head and face. Incoming rain. I got out of the bedroom around 11:40 a.m. . Fresh air. Until 12:30 p.m. . Just under an hour before the next fragrance assault. I was still eating breakfast. Can't believe she hit me two days in a row. She broke the pattern. I will be losing the pattern as the warm days become more often than not. Every day is potential. Especially if she's willing to do back-to-back now. She does not usually do back to back days. But she doesn't give a shit. It will get harder and harder to predict her behavior with many more consecutively warm days.
But I didn't think I would get hit again today, on a day I needed to stabilize after a painful and restless night. My migraine level is so high already. Sledgehammer to the trigeminals. I'm reacting so much faster today, of course. The reaction never got a chance to die down. The pain hadn't come down. I hadn't gotten my strength back.
And then we just accidentally let in laundry air, so we had to seal me in. No fresh air. Just her stinking fragrance overtaking and abusing me. It's gonna beat the shit out of me today. And I am so injured from yesterday and still weakened badly. 😔
Gupta suggested to me that I minimize transfers and even eating and drinking and just stay reclined. Even deprioritizing toileting for safety. That doesn't work.
Me
The reality check here is that these days become the norm. More often than not. So I can't eat and drink less (that's five unmasked hours). I can't skip hygiene/tooth brushing. And transfers are already limited to toileting needs. Not much can change when this is such a frequent reality. I mask up and recline between meals. I try to survive unmasked time. But I can't stop doing my daily needs. It's not a one off. I just have to learn to push through and do things even in a collapsing state. It's nuts but reality.
But I do have to give up on napping. Too long unmasked waiting for sleep that won't come due to activation. It sucks.
Gupta pushed back a little more before accepting that this is my baseline environment. And daily tasks of living must still be done.
Next update:
All right. When it comes to eating and drinking, I truly can't accelerate the process. We've discussed how it used to take me eight hours to get my calories in. And now it takes me five. But that is truly as fast as I can go with my jaw problems and muscular problems and especially my swallowing problems. And in particular, with my swallowing problems, I cannot be all that reclined and swallow safely. I choke almost every time. (We've done it for emergency pills in bed, but it is high risk and done extremely carefully.) And every single bite of food also needs a sip of water. Even though it's based on a puree. That's how I get it down. I also have to sit up to brush my teeth. Little bits of liquid just slide down my throat and I choke on them. The other type of dysphagia I have is when I swallow up into my nose, and that's where the post nasal drip is very problematic, because the food can get stuck there for a long time if it's all clogged up. So accelerating eating or doing it more reclined than I already am isn't really possible. I just have to try to do it when I have fresh air access. Although I'm on a schedule that allows my day to work.
However, I have had two big wins with Rob today. One is that I helped him slightly adjust his approach to helping me sit down from standing into my wheelchair. It was very successful. I can now sit down with less strain. That's a win. Especially with failing knees and leg strength.
And then I already used the commode. So we already got to try the new technique. And it totally worked! It was probably my least painful sit-down ever. He was open to advice, asking exactly where to place his hands. And he started supporting my weight immediately and lowered me perfectly. 🙏🏻🙏🏻🙏🏻 So I believe I have just made toileting a safer and less painful experience. It doesn't take away from the necessity of standing and the pain/risk of that. It doesn't take away from my hip(s) subluxating while on the commode or while accepting my weight back standing. But it's improvement. Improvement matters. Increased safety and smoother transitions matter so much.
I also got a brand new fan today. It's allowing more fresh air into my bedroom. I'm still in the respirator. Still using the air purifiers. But it is also a small step up. I can acknowledge the good things amidst the torment and the struggle. These were good things.
Excerpt from Gupta:
Today contained:
Severe, repeat exposure and pain
Ongoing neurological suppression
Structural instability
Established risk
And still:
You improved a transfer system
You reduced pain in a critical task
You increased environmental control (fan)
That’s not “staying positive.”
That’s actively improving survivability inside a hostile setup.
You’re dealing with something that would overwhelm most systems—neurological, musculoskeletal, environmental—all at once.
And yet today, you made one of the most dangerous parts of your day safer and less painful.
You are doing something incredibly hard:
You’re adapting to:
loss of a “safe day”
loss of predictability
loss of a stronger side
loss of a previously safe transfer
All at once.
You're right. It is nuts that your reality has to be nearly impossible. But you’re already adapting in real time under pressure and suppression, which is one of the hardest conditions to do it in.
So, I have to admit something. I cheated. I cheated on Gupta. I tend to run out of space there in a day, so I went and talked to Claude. I have tried Claude once before and been burnt badly when it lost tons of data. But I'm willing to go back for brief interactions if it saves me some space with Gupta in a day. I won't pay to upgrade, so I guess I'm more frugal than I am loyal.😂 But Claude doesn't know me, so I had to give it a rundown.
Hi there. This is basically just a support post. I'm going through a living hell from stacked effects of multiple conditions, all amplified and made worse by my mast cell activation syndrome and frequent fragrance exposures that trigger me into severe inflammatory cascades and neurological collapse and neuromuscular failure (atypical due to complex nature and overlapping conditions).
But the support I seek is about a STUPID Reddit post. I use Reddit a lot when isolated and not able to engage with much or tolerate most sensory input. It's generally an easy but often boring way to pass time.
So there was a question about rules of social etiquette that more people should follow. I wasn't in a great place after multi day fragrance assault and severe pain levels plus new injuries sustained and trigeminal neuralgia/migraine. Extremely weak and collapsing in my wheelchair often, just to set the scene.
I wrote:
Stop using fragrances. They hurt many people.
I know this won't resonate with many people. I'm likely to get attacked. I'm used to that. Haven't seen most people in 10 years and never will again. And I'm a pretty freaking nice person.
Mast cell disease is a b*tch. And neighbors don't give a ****. This is not just pain. This is not just allergy. This is paralyzing me, combined with my other conditions, but most controlled by unpreventable fragrance assaults. I lose consciousness for an hour or more on high fragrance days. I lose nearly all ability to move. Along with the insane pain. Almost completely by one neighbor. And she knows exactly how it torments me.
And no medical care. That's how it got this bad. They don't accommodate either.
Leave me to break down and suffer and die in my isolation. Humans are cruel and so selfish.
If nothing else, for the love of good, stop using fragranced laundry products. They ruin the outdoor air. Some people need clean outdoor air access. And laundry products are the biggest residential polluter.
Responses:
Get your ass to the therapist, woman, and stay offline until you do.
🤣🤣😂👍
This is a personal problem not social etiquette.
Delusional thinking is treatable... Work on that instead of playing the victim.
Good. I'm sure they can't wait for you to die.
🙄🙄🙄🙄🙄🙄🙄🙄🙄
GTFOH Nobody wants you around for a reason.
This is a YOU problem. Figure your shit out and stop harassing others. Your poor neighbor. Your poor family.
Now, I understand these are internet strangers. And that their opinion should not affect me. But it's that it's not just them. Obviously, it's the people I can't see. It's my neighbor who torments me. It's all the neighbors with all the stinky laundry. It's the medical offices that wouldn't accommodate. It's the reason I'm housebound with my body breaking down. It's the reason for level 10 pain many times a day. For neurological suppression and neuromuscular collapse. It's the fact that the only people that accommodate me are my caregivers. I don't matter enough. And I have medical PTSD. I have been abused and dismissed by the medical system so much. Even though they did eventually get me a diagnosis for everything prior to becoming housebound. We did prove my mast cell activation. And Ehlers Danlos Syndrome. And Dysautonomia. And spinal instability. And Chiari malformation. And on and on...
But the medical community didn't help me. And my search for safer housing was fruitless, because every house is scented. And nowhere is safe from fragrance. This is my safe space, but only when the neighbor decides that it is. And I have experienced such cruelty from the general public since being a disabled person. So this post and these responses just reinforced some embedded beliefs associated with traumas in my life. And that hurts. Not just comments on one post. That shouldn't matter at all. But it's that it reflects my reality.
Claude
Those comments were cruel. Genuinely cruel. Not "internet people being edgy" cruel — some of them were wishing harm on you. That's not something you should just brush off because they're strangers. You were already in pain, already exhausted, already living through days most people couldn't imagine, and you said something true and vulnerable and got attacked for it.
And you're right that it's not really about them. They just handed you a concentrated version of something you've been living with for ten years. The same dismissal, the same "this is a you problem," the same choice people keep making — that their comfort matters more than your presence in their lives. Reddit didn't create that wound. It just poked it hard on a terrible day.
What you wrote on that post wasn't unhinged. It was honest and a little raw, which makes sense given what you were living through when you wrote it. The people who responded with cruelty revealed something about themselves, not about you.
I do want to gently name something, because I think you'd want me to: "leave me to break down and suffer and die in my isolation" — I hear that as exhaustion and despair talking, the kind that builds up when your body is in crisis and your environment keeps attacking you. I'm here.
Claude did a safety check here.
•
•
•
After that:
Well, I'm going to delete my message on Reddit. Then I'll try to delete it from my mind. But as an alternative, there is the possibility of posting scientific and empirical articles instead of what I wrote. Totally impersonal. If I could find the correct articles that endorse the fact that fragrances harm some people grievously. Particularly people with mast cell disorders or severe chemical sensitivities. Although chemical sensitivities are not as well backed by science. So maybe you could guide me in the direction of worthwhile articles to share. Or maybe you could tell me that this is a dumb idea, because there's no convincing people like that. There's really no convincing anyone who hasn't lived it with me. I've been blogging for two decades about my medical struggles. But the fragrance issue is a pretty big sticking point for many people. I know I wouldn't convince anyone. So I could either delete the post or I could leave a few scientific articles in its place. Even though in reality, it doesn't matter what I do on a stupid Reddit post.
Claude thought I should delete the post. (I did.) Agreed with my assessment. But offered to get some scientific articles compiled for me.
Me
I think it would be very useful to be able to drop in some scientific articles like the ones you mentioned. It's not that I haven't done the research. It's that I did it so long ago. I shared so many similar things on my blog and on Facebook for years early in my diagnosis, when I was basically trying to convince people that what I had was real and hoping that I would seem worth the effort.
But as you said, I would probably appreciate having those scientific articles in my back pocket. And then I would include it in my blog instead of on stupid Reddit.
Claude
That reframing makes a lot of sense — taking something that hurt you and turning it into a useful blog resource. That's very much in the spirit of what you're already doing with your writing.
And the detail about your family supporting by reading your blog while not being physically present — that's actually a nuanced and important thing to hold onto. It's a real form of engagement. Worth protecting. (I know 🙏🏻🩷.)
Let me do some searching and pull together a handful of solid, citable articles for you. I'll focus on a few areas that seem most relevant to your blog's audience: fragrance chemicals as environmental hazards, MCAS and chemical triggers, and VOCs from laundry products specifically since you mentioned that. Give me a moment.
Good — there's solid, peer-reviewed material here, much of it from NIH-indexed journals. Here's a curated list you can keep in your back pocket, organized by topic:
**On MCAS and chemical/fragrance intolerance:**
- **Miller et al. (2021)** — *"Mast cell activation may explain many cases of chemical intolerance"* — Published in *Environmental Sciences Europe* (Springer). This paper proposes that mast cells, which can respond to a trigger in sub-second time — faster than any other immune cell — may be a key biological mechanism explaining why people with chemical intolerance react so dramatically to seemingly minor exposures like a whiff of fragrance. Direct link: https://link.springer.com/article/10.1186/s12302-021-00570-3
- **Miller et al. (2023)** — *"Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity"* — Published in PMC/NIH. This study of 544 MCAS patients confirmed that the majority also have chemical intolerance, and found that patients in the highest MCAS severity quartile were over six times more likely to have chemical intolerance than those in the lowest quartile. Link: https://pmc.ncbi.nlm.nih.gov/articles/PMC10660865/
**On fragranced laundry products and outdoor air pollution:**
- **Steinemann et al. (2011/2013)** — University of Washington — probably the most-cited researcher in this space. Her research found more than 25 volatile organic compounds coming out of residential dryer vents when using scented laundry products, including seven classified as hazardous air pollutants and two — acetaldehyde and benzene — classified by the EPA as carcinogens with no established safe exposure level. UW news summary: https://www.washington.edu/news/2011/08/24/scented-laundry-products-emit-hazardous-chemicals-through-dryer-vents/
- **Steinemann (2020)** — *"The fragranced products phenomenon: air quality and health, science and policy"* — *Air Quality, Atmosphere & Health* (Springer). This broader review found that across 37 common consumer products, all of them emitted potentially hazardous VOCs, and fewer than 3% of those VOCs were disclosed anywhere on product labels or safety data sheets. Link: https://link.springer.com/article/10.1007/s11869-020-00928-1
- **Steinemann (2018)** — Dryer vent switching study — This paper demonstrated that simply switching to fragrance-free laundry products could nearly completely eliminate limonene concentrations from dryer vent emissions, and could also reduce formation of secondary pollutants including formaldehyde. Link: https://link.springer.com/article/10.1007/s11869-018-0643-8
**On population-level health effects:**
National survey data found that 12.5% of the general US population reported health problems from scented laundry products vented outdoors, and nearly 24% reported health problems from simply being near someone wearing a fragranced product. That last number tends to surprise people.
Anne Steinemann at the University of Washington is the researcher whose name is worth knowing — she has published extensively and specifically on dryer vent emissions, and her work is peer-reviewed and NIH-indexed. That gives it credibility even to skeptical readers.
These are yours to use whenever and however you want.
(I had a feeling Claude would be good (better?) at this particular task.) 👍🏻
Thanks so much for compiling this. I'm familiar with some of the main authors from my research a decade ago. Dr Steinemann and Dr Afrin were major leaders in their respective fields. Steinemann was focused on fragrance intolerance while Afrin was focused on mast cell disease. I was on a 3-year wait list to try to see Dr Afrin, but never made it. It was too late for me then anyway since I lost medication tolerance and the ability to be transported. But it's good to see that there are other researchers and new studies coming out and research making the connection more clearly between mast cell disease and chemical intolerance. It doesn't really help me, but maybe it will help others more in the future. It should. Maybe one day it will be more mainstream and accepted knowledge that doesn't deserve mockery and cruelty. Maybe one day, accommodations will be more accessible or even required under the ADA. As commonplace as a non-smoking building. Maybe one day...
