u/Marguerite_Moonstone

My good friend and chronic illness buddy and I both had doctors appointments at the same time today at different clinics. We were chatting before hand over the phone and it kinda feels like when you and a friend accidentally have matching outfits, but for us chronic illness people. ❤️‍🩹

Just loving even the very smallest joys lol

Hi all!

One of my best friends just had her gallbladder out (finally, after years of suffering). I wanted to help her and her sister out with adjusting to her new diet by getting them a cookbook or two for inspiration. And if there is a good one, essentially the user manual to living without a gallbladder. Do any of you have some book recommendations? Or maybe podcasts too?

Hi all,
I had my first run in with anaphylaxis last Monday, I’m doing much better and taking my prednisone. But my hands are still puffy, my wedding ring almost got stuck, and my wrist looks somewhat swollen. Is this normal? How long does it last? Any tips for getting rid of it? I did some detox stuff and kept my hands elevated for an evening while watching tv, it helped but was back to puffy by morning.

Update: thank you all! resolved, it’s open, took about 8 tries to get anything besides a busy signal. Apparently it’s closed every Wednesday.

Can anyone confirm if the bishop museum planetarium is open and operational today? Heard rumors it was closed yesterday

Might be dumb, might be genius, need feedback. I’m recovering from an anaphylaxis event yesterday. I’m on all my usual antihistamines plus more that I don’t usually take, prednisone and have an epi. I fully understand the seriousness and went to urgent care yesterday and will go to er if need be, but I feel I’m recovering.

However my tongue feels raw like I burned it. When I took my cromolyn I put a few drops on my tongue and it felt nice but quickly got washed away. It’s also hot today. I was thinking about popping a few in some water and putting them in my popsicle mold in the freezer. So I can get a nice 10-15 minute flow of it in my mouth plus ice usually helps hives heal externally, so might help mouth too?

Thoughts? Will it not survive the freezing proceeds? Make the water not freeze or the salt make it colder?

Any one else feel extra hyper mobile/ joint instability either post anaphylaxis or post steroid shot?

First ever anaphylaxis today after an allergy shot (which is crazy since I’ve been on them 6 years with a year and a half of maintenance dose), some stress, and possibly the movie popcorn? Will run down possible triggers tomorrow when I feel less like a pancake that got run over by several trucks.

I got medical help immediately, I’m being treated and watched by husband after being discharged with a shot of cortisone in the butt, a course of prednisone to start tomorrow and told to take extra Benadryl and some Zyrtec I grabbed at the pharmacy since I don’t typically take it as it usually does nothing.

But when I got home I realized my knees are trying to subluxate, the stairs were challenging, my fingers are also extra bendy and I popped a knot that had been in my neck for weeks. Is this a “normal” symptom? I’m sub clinical hyper mobile without any hEDS genetic markers, just party trick bendy. I take it is part of the bundle deal that comes with the auDHD, IBS, POTS, dyslexia deluxe package.

Just here to appreciate the hold assist function on iPhones to now have to deal with the sensory hell of holding music with constant repeats of recorded messages every few seconds. It’s way less energy when I have those catch up on calls and mail days.

Edit to add: two more calls down, I realized what it is, I stop masking when it’s silent vs keep mask up for holding music 🤦‍♀️

There was a guy on here who posted quite frequently for a while then seems to have completely vanished. I don’t remember his exact screen name but I think it was ill cardiologist? He was one of us in the worst shape, emaciated, and was actively concerned about surviving an upcoming procedure involving tube feeding. He also had a love of cupcakes. I fear the worst. Does anyone happen to know if he’s ok?

Hi fellow sufferers,
I am not sure if there is actually over lap here but I wanted to ask, as I am in a world of pain and desperate. I’ve been suffering with a long list of health issues but most recently I was diagnosed and treated for MCAS with great improvement! However, while the frequency of my pain flairs where I wouldn’t wish on anyone (vulvadyna / vestibulodynia) it’s still as bad as it gets tonight. My usual treatments (amitryptaline cream, hot salt water bath, cortisone ointment, oral amitryptaline, skull cap tincture, Advil, plus the usual cromolyn and Allegra with dinner before it hit ) are not cutting it. I’m wondering if there is a connection between it and MCAS, if any of you have this same torture (8-10 pain incessant electric burning) and what has worked. I’m about ready to stick a cromolyn ampule in my peri bottle because at this point it can’t really get worse.

So, sos, send your solutions no matter how insane they sound. Or just commiserate as I sit here trying not to faint. 🛁

Hi fellow sufferers,
I am not sure if there is actually over lap here but I wanted to ask, as I am in a world of pain and desperate. I’ve been suffering with a long list of health issues but most recently I was diagnosed and treated for MCAS with great improvement! However, while the frequency of my pain flairs where I wouldn’t wish on anyone (vulvadyna / vestibulodynia) it’s still as bad as it gets tonight. My usual treatments (amitryptaline cream, hot salt water bath, cortisone ointment, oral amitryptaline, skull cap tincture, Advil, plus the usual cromolyn and Allegra with dinner before it hit ) are not cutting it. I’m wondering if there is a connection between it and MCAS, if any of you have this same torture (8-10 pain incessant electric burning) and what has worked. I’m about ready to stick a cromolyn ampule in my peri bottle because at this point it can’t really get worse.

So, sos, send your solutions no matter how insane they sound. Or just commiserate as I sit here trying not to faint. 🛁

What would you all consider recovered or remission for yourselves? 100% back to pre illness baseline (minus basic aging)? Or just enough to have a life where you can do the things that matter most to you even if some energy level change is more or less “permanent damage”?

So I’ve had a particularly wonderful high intensity week of travel and fun with (so far) no more than mildly inconvenient consequences. I want to properly get home and evaluate my base line in my home environment before making any wild claims when the other shoe just hadn’t dropped yet. But I’m starting to warily side eye… dare I even hope or utter the word… recovery ❤️‍🩹

I don’t do much work with deities as I consider myself a witch and recovering catholic, I usually stick to elemental magics and me and the divine leave each other in peace. However, I am facing LA traffic and LAX tomorrow evening, and it’s the World Cup. Who should I pray and make an offering to? And what should I offer? I have candle, tarot cards, crystals, some candy and fruits, some art supplies, and the usual contents of a suitcase and hotel room.

I don’t do much work with deities as I consider myself a witch and recovering catholic, I usually stick to elemental magics and me and the divine leave each other in peace. However, I am facing LA traffic and LAX tomorrow evening, and it’s the World Cup. Who should I pray and make an offering to? And what should I offer? I have candle, tarot cards, crystals, some candy and fruits, some art supplies, and the usual contents of a suitcase and hotel room.