u/xboringcorex

Question for folks - is there any way to figure out everyone’s favorites just through the game? I am finishing year 2 and have really really enjoyed not looking up stuff during this play through. For a while, the game was giving me a lot of clues as to what people like with random conversation drops and the torn notes, but I feel like that is drying up.

Is there any way to do this or should I bite the bullet and look stuff up and be glad I made it this far?

I KNOW THIS DOESNT APPLY TO EVERYONE, i am just looking for fellowship with similar people, not taking away from those who developed it more recently- you have your own journey !

I dip in and out of MCAS and HI(T) online support spaces. It isnt everyone, but a very vocal population who are always ‘Find your root cause!’ ‘I found my root cause!’

Great for you, I dont care - I went on that journey 15 years ago when I first figured out my diagnosis to no avail. I had symptoms as a young kid and teen - extreme sleepiness after meals, hay fever all the time, post exertion malaise despite being an athlete in good condition, brain fog, GI issues, etc. Did it get worse eventually? yes Was there a precipitating event? No just a steady decline.

I am tired. I just want to talk about living my life with MCAS and how to do that with the best quality of life. It is exhausting and miserable to spend many years looking for a ‘cure’ - and I think many people with new diagnoses don’t understand that and because of their own experience and desperation have zero ability to empathize with a different experience. I too spent the first few years desperate and throwing money at doctors who would cure me and spending time and effort on protocols.

I just want one post without a ‘look for your root cause’ type response. And I want more space for conversations with long time people who want to improve quality of life.

ETA: shout out to the person who commented that actually there is a root cause - you proved my point!

I havent been full time in a year, and started RDTs in the interim. I used to do infusions every 2-4 weeks and had to flex a few hours to do them (meaning take off a bit early day of and make up the hours elsewhere).

How do you all fit RDTs into a 9-5 job for those on an every 3-5 day schedule? I am really sensitive to ket and get bad nausea, so right now on days I take it I dont eat at all until the afternoon. And I am usually a bit sensitive the day after. I tried going longer and longer between doses and it set me back.

How are other people doing this? Are you just less sensitive so it isnt a big deal? Any advice appreciated.

I totally understand if it is an area of the house that I am not usually in, or not usually in at a certain time - that is my bad.

But when I am chilling on my couch in the normal seat at the normal time of day why would one choose to run across my lap?

(Not asking for ID- in US Midatlantic, I am assuming it was a wolf spider because it was dark and meaty and fast)

This is an experiment and is the longest I have stayed anywhere that I didnt know was safe safe. But I really want to survive enough to have fun!!!

Situation

My friend said they dont use smelly things - and I was 90% sure she doesnt mean what I mean by that, but that is because she doesnt get it. It is not the worst - the fragrances are a mild laundry detergent and those tide or all ‘fresh scent’ detergent sheets + hand soaps and cleaning supplies. No plug ins or candles or scent beads.

But, i have been here a few hours and between the mild fragrance, dust, and dog dander , my allergies are ramping up. And this is after traveling foe a few days and staying in hotels and being on planes.

What I have done to mitigate it:

I brought my own sheets and pillow which i use to cover their sheets and comforter.

Friends gave me their coway air purifier for the room but i am skeptical about if it is helping (normally i love mind, but this one has dust on it)

Took xolair right before the trip

Taking all the meds and cromolyn and trying to eat clean despite traveling

Complicating factors:
Just got my period
Cromolyn may be fucked despite my best efforts to keep it at temp - we were in a very very hot desert area.
Their dog is a short hair which is the worst for me. I dont see any dust, but I have the worlds worst dust allergy (literally, it freaks out allergists every time) - and my eyes are dying even with those ketofin eye drops which means dust.
Since they use dryer sheets in their dryer, i am really apprehensive about also using it though I would like to do a small wash

What my goal is: i want to have a nice time and be able to stay the whole week. These guys have gone out of their way to make the house clean, get a window AC for their guest room, put together a full menu that works for me etc etc.

Any suggestions of other stuff I can do?

PSA - Denver airport uses VERY strong fragrance in their bathrooms. I checked more than one and each time i was choking on it and ran away from two but yall I had to pee.

Now my hair qnd clothes reek, even though I tried to be as fast as possible (i know it doesnt totally matter)

I am supposed to wear these clothes the rest of the day. And cant wash hair until evening.

I am assuming no tips, but thought I would ask.

ETA: I reported it to the lawsuit thing.

Managing MCAS at least 15 years. Foods have come and gone, and now for whatever reason my favorite summer treat is out. My stomach just absolutely revolts even with crom and DAO.

Join me in a moment of silence for all ours foods we have lost.

I have tried to make such a list before, but it is super long and people hate nuance like “I can have a bit of avocado on a salad, but like 2 times a week, not more “

Anyone have *good* examples that have worked well? Right now I am thinking I will just send recipes.

My friends love to cook and love me, and really want to make it comfortable for me. (Very lucky for them)

ETA: PLEASE READ - I AM ASKING FOR EXAMPLES SO LIKE TEMPLATES I AM NOT ASKING FOR AN ACTUAL LIST so you dont need to tell me everyone is different.

Thank you to the people who read it and gave helpful advice!

I have an excel sheet of every one I have tried- physical, chemical, US, Korean, Japanese - no fragrance, no niacinamide, no HA.

Every time I find one I seem to tolerate, in a few weeks it is causing my face to sting.

Yall. What do I even do? Wearing hats obviously. But … it is sunscreen! I am a white lady with melasma and rosacea.

FML

Eta: I appreciate all the comments to help! This is why I love this sub. So some answers: Yes my skin barrier probably has issues. Yes I am working on it, but it is still sunny out. Yes I have tried all the main recs on this sub including the common ones for sensitive skin like vanicream and elta md and cerave which doesnt blend in it just pills? (elta and supergoop are some of the worst offenders for irritating my skin unfortunately, as a category USA physical sunscreens are the most problematic - best right now is a purito physical one but it started stinging yesterday) - I am being literal about the spreadsheet. It has 36 sunscreens on it. I would love recs from anyone with similar struggles. Not ungrateful to everyone for advice and suggestions!! Just tired. :-(

Flying out west where it will be hot during the day. Unfortunately have several days where we change locations every night, so can’t leave it at a house or hotel. We are planning to do some hiking, so the car will probably be left in a parking lot with sun.

Trip ends at a friends house for a week, I am wondering if I should ship it to their house and bring a separate stash for the first week where we are traveling? But I worry about heat with shipping.

(Over the winter I had most of a 90 day supply turn into water because of 50-55 degree temps so I am paranoid. And I really really want it on the trip so I can minimize how miserable I am)

I have been not working (but not unemployed in a stressful way) for a year now. It has been a totally fucked up year with IRL stress stuff - getting diagnosed with breast cancer and a tree falling on my house were just part of it.

Because my cancer is hormone driven, I had to stop hormonal bc which was the only thing sort of managing my pain which I experienced every single day all day and it was debilitating without bc and diclofenac. Diet, GLP-1, etc did not help.

Last summer (pre cancer dx) I tried all of the nerve pain med options (literally spent 3-4 months just trialing meds) and the ones that worked had dangerous side effects even at very low doses which I got compounded (the TCAs worked but caused serious urinary retention).

End of summer, breast cancer diagnosis and I have to go off bc.

Somewhere between then my pain was relieved by several orders of magnitude. I did nothing during this time except cancer dr appointments. In my ongoing quest for endo pain relief I got a hypogastric nerve block in mid October, *but the pain had already lessened* to the point where I wasnt sure if it worked or not.

Wtf happened? I am now not taking any pain meds of any kind. I now have periods and they are god fucking awful and debilitating even with COX inhibitor pregaming. But the constant all month pain? Blip on the radar.

Was it just the work stress? My work was making me miserable and it was super stressful, but the pain seems to be slowly coming back now a year later.

Someone please have a theory.

AND THIS IS NOT ADVICE OR A SUGGESTION ANYONE DO ANYTHING LIKE QUIT THEIR JOBS AND STOP BC

Uh, so I searched the sub for how people dealt with nausea, and oh wow people are put here fighting for their lives.

I started with 3 vials a day on Friday and my only issue is nausea. (This is actually my second time on it, same thing last time but then had insurance issues)

So like uh… did anyone elses body not freak out? This is probably the only drug I have not had a hypersensitive reaction to (not exaggerating).

Hi, not new to Ketamine or this sub and you all always have great advice.

It isnt unusual for me to have 1-2 days of sadness or anxiety after a session, but this time I am on day 4 of this ‘icky’ feeling and struggling to integrate it.

I welcome any/all advice. I am supposed to have another dose today, but I dont like doing it when I am still emotionally ‘hung over’ from the last one.

Thanks for any suggestions - again, this community is always so great.

This is a rant/vent, but I welcome ideas on how to help as well.

After diagnosis and treatment for hormone driven breast cancer, I cant take bc anymore which was preventing periods. Now that I have periods again, fuck my life. 😭 today I went from ‘I feel like I might have a cold? To rapidly devolve within two hours to bleeding, in pain, shivering, and asleep.

I have tried every medication intervention other than Orlissa/Lupron at this point. Thanks to a hypogastric nerve block, i have minimal pain most of the month, but my periods wipe me put completely for 3 days every month, and shitty for a week. Flu like symptoms, exhaustion, pain, nausea. I do ‘pregame’ with a COX inhibitor every month (i have tried Aleve and Diclofenac), and that helps severity of cramps but doesnt fix.

I am looking to go back to work after the cancer treatment, but I dont know if I can hack it. This is beyond just painful cramps - I am completely useless those three days. Like bed bound.

I am not yet 40, but I am just like why the fuck do I keep getting all this bullshit on plate? MCAS, endo, breast cancer, rosacea, some kind of hyper mobility, depression and anxiety.

I have a therapist and friends who are supportive, but wanted to vent to a community that gets it.

And I have asked before in this and other subs, but if anyone pre menopausal has similar struggles and sees this I would appreciate hearing about your journey.

I have had one excision, considering a second and a hysto. Potentially have adeno, but no diagnosis. And I really really do not want a hysto. At all. It is a personal thing, i wish I was more chill and okay with yeeting it on the possibility it might help. MRI shows variation in thickness, but within normal - had 3 specialists look and say the same and offer hystos but not strongly recommend one way or another. If imaging showed adeno, i would get rid of it.

I am afraid of orlissa putting me back in a depression or daily pain - and remember I cannot take ad back hormones, so I have to raw dog it.

Just like, what the fuck universe?

Just curious if Tamoxifen did anything - help/hurt/nothing ?

In general I would choose not to take it, (or an AI).

My oncologist said she has seen it help endo, make it worse, and be neutral. She didn’t know about MCAS.

Just curious if Tamoxifen did anything - help/hurt/nothing ?

In general I would choose not to take it, (or an AI). My oncologist said she has seen it help endo, make it worse, and be neutral.

Without hormonal bc I am dyingggg from endo symptoms.

I just started my 3rd tablet pack, so that is just over 60 days. I have noticed nothing - no real side effects after the first dose and no improvements either.

I am getting discouraged reading posts on here saying “two weeks in and I dont need antihistamines anymore!” “No more waking up with itchy eyes!”

I do all the environmental regimen stuff, but I have what my allergist describes as ‘the worst dust allergy I have ever seen’.

I know it is 3 months > years for effects, bur I was really hoping for something by now. Appreciate any advice.

(I do have other health stuff including MCAS, but addressing the dust allergy is a major part of my treatment plan)

I am not sure what is the right sub because I dont think the culprit is a fragrance, but it is about FF sunscreen options. I have rosacea and fragrance issues.

So I have tried 30 sunscreens over the past two years, both chemical and physical - US and K and J brands. As you know the fragrance free sunscreen hunt is hard! And I avoid niacinamide and HA as it triggers my rosacea (also very hard).

I have noticed that every US physical sunscreen (not chemical) I have tried has stung my skin and irritated it - but several asian brands have been okay.

Any idea what the culprit might be? Or suggestions on how I test it to figure it out? Do I need to swatch and make a spreadsheet on ingredients labels until I figure it out?