#stress dose steroids

[mcatmemoranda]

I have a patient takes prednisone 5 mg daily for poly myalgia rheumatica. She’s going for surgery and will get stress dose steroids, Which my attending so it will be hydrocortisone 50 mg before the surgery, then 25 mg q8 hrs for 24 hrs after surgery.

[tj-crochets]

The options with the * are the ones I've already scanned, and all but the blorbo are sewing patterns (I've already shared the blorbo sewing pattern)

[thebibliosphere]

If you feel like talking about it — what’s the *aftermath* of anaphylaxis like? I know that an epipen is just step one, and further treatment and observation follows at a hospital, but I’m curious about what the subjective experience is like in the longer term; whether one can bounce back fairly well or whether there’s lingering unpleasantness.

So with the caveat that everyone experiences things differently (and putting this under a cut because I don't want to trigger anyone):

After epi is administered, you're usually put on a cocktail of drugs ranging from several different IV antihistamines (typically a mix of h1 and h2 histamine blockers and a giant whack of benadryl), anti-nausea meds, a beta-agonist to assist with breathing, and a shit-whack of steroids.

Once you've been stable for a few hours and discharged, you'll be told to watch for symptoms for up to 72 hours, which is the period in which a biphasic reaction can happen. (For me, it's always within 20 minutes to 8 hours after rescue medication is administered if I'm going to slip back into an allergic response, but everyone is different.)

Depending on your symptoms, you'll sometimes be told to take an antihistamine for up to 72 hours (if you're not already taking one daily), but the one thing they always send you home with is a steroid like prednisone. I usually need a 5-7 day dose because I need to taper off it or my adrenals crash, but some people get a 3-day dose and come off it with no problems.

Body-wise, it's a draining experience, and the medications often leave you both tired and wired. It's an odd sensation.

Mentally and emotionally, it takes me a lot longer to recover because I've just been smacked with a proverbial mallet of stress hormones and adrenaline, and that can often lead to depressive moods and even rage for some people. The prednisone also heightens emotions, so it's not unusual to be having some of the wildest mood swings of your life while also processing the stress of what just happened.

It takes me a while to bounce back, typically about a week on full rest, but I know some people who claim to feel fine in a couple of days. Couldn't be me, haha. My body goes into hibernation mode for quite a while, and I'll be lying in bed exhausted and jittering like I've had ten espressos, but I don't know how much of that is general anaphylaxis or how much of that is specific to my mast cell disorder.

So, for me, it's a desperate need to sleep, jitteriness, depression, and rapid mood swings from the prednisone followed by a general feeling of blegh. It also takes me about 72 hours to be able to eat solid foods again because of the effect anaphylaxis has on the digestive tract (the esophagus is lined with histamine receptors; that's why some heartburn meds are actually antihistamines.), but I suspect that's my MCAS.

It's basically just a bit shit, lol.

[wishmaster]

I’m so stressed out with work and grad school right now and wish I could just be care free and horny. Could you turn me into a huge dumb roided up frat bro that just works out and has sex all day?

Bro's Life

One morning you woke up, your body was huge, thick muscles, pecs as big as girls tits, your legs and arms were massive. It took over 3o minutes for you to get out of bed and when you did walking to the bathroom made the house shake. As you steadied yourself you got a look.

You were still dressed, you must have passed out last night. Fuck bro, you thought as well that was pretty much the only thoughts you had now. You were ripped massive even, but your muscled body came with a price, you were dumb as shit now, even the most simple thing were hard for you to understand, another side effect came from the massive amounts of steroids flowing through your body, as you walked to take a piss , you couldn't even feel your dick anymore, in fact, in recent months you had been forming a vagina in i's place. but fuck who cares when you're ripped. In fact thanks to your new pussy you were the most popular bro in the frat as many of the guys loved fucking you, in many cases they'd receive a good dose of roids from just pounding you, nowhere near the amount you had received but enough to turn them into instant jocks. Hell even the nerdy pledges would end up looking like models after fucking you. Here's Nigel President of the chess club and the DND chapter.

In fact you loved it. Being able to turn your whole frat into the sexiest boys on campus made you super popular. when you weren't working out you were getting fucked, hell the frat had even been making a mint selling access to your cursed body.

[followthebluebell]

hello! my cat was recently diagnosed with asthma, and her vet says her treatment will be steroids indefinitely (shes currently taking 1ml twice a day, but the goal is to get down to 0.5ml 1/day, as long as that dose is still effective). overall im lucky shes fairly docile, i know my other cats would be a lot more difficult to medicate, but im still struggling with getting the medicine in her mouth. she jerks her head away quickly, and a lot of the time the medicine either misses and gets everywhere, or she'll open her mouth and dump some of it back out. i cant seem to be quick enough with the syringe to get all the liquid in her mouth and have her swallow it.

do you have any advice to make this easier for the both of us? i know itll never be Easy easy, since i cant explain to her that its for her own good, but im stressing that shes not actually getting the medicine since its hard to tell how much got in her mouth and got swallowed. thank you so much for your time, i really really appreciate it even if you dont have any tips.

as payment i present: The Penguin in question. shes such a sweet girl. i just want her to feel better ):

Hello! I'm sorry to hear your kitty is ill--- asthma is tricky to handle, so it's good that you've got a treatment plan already in progress.

so, it really depends on what kind of medication she's taking. 'Steroids' is a pretty broad group and there are several steroids commonly used for asthma in cats that can be compounded into a tastier form, like small tabs that are much easier to crush and hide in food. Some steroids can even be made into a transdermal paste that just goes on their ear. Personally, I find that transdermal medications don't work as well as oral, but it's something to talk to your vet about.

I strongly encourage you to discuss other options with your vet to see if this is a possibility. Absolutely keep those lines of communication open and explain that you've been having problems dosing your cat.

Another alternative is to try hiding the liquid medication in an especially tasty treat, like a churu or baby food. A LOT of cats absolutely love chicken or ham baby food and it's perfectly safe as long as the baby food doesn't have onions or garlic in it. I know it's VERY controversial but I've also hidden particularly bitter medications in whipped cream--- some cats have very violent stomach upsets from dairy, so it's a VERY calculated risk!

Roomba is pretty difficult to medicate. Due to her various food sensitivities, it's not really an option to compound her medication with flavors. She's also very difficult to burrito, she's too tiny for my typical cat restraint methods, and she won't eat her food if her meds are mixed in. I typically just load up her syringe with SLIGHTLY more medication than is called for and administer it quickly, hoping that most of it stays in her mouth; since pred is very cheap, I'm willing to risk losing some. It's also important to aim for the upper mouth, towards the back, without actually getting it IN her throat directly, because that's a choking risk.

Picking her up quickly by her armpits encourages her to swallow. I don't let her feet leave the floor when i do this, because it's uncomfortable for cats to dangle like that. Just the quick pick-up seems to do it. Gently blowing air in her face also seems to work.

[doberbutts]

I have to tell you I adore you and all your fabulous fur babies!

I would like to ask if you can talk about your experience being on t, specifically the mental and emotional aspects of the hrt process. I have read a lot about the physical changes that happen, but I don't see anyone talking about how your personality, mood, energy, etc. change.

Thanks!

Hey thanks!

Honestly while there is a lot of misinformation regarding what testosterone does to your emotions, I feel lucky that my endocrinologist never really said anything except that I may feel wild mood swings or have trouble controlling my anger in the first few months as my body and mind adjusted to the new swing in hormones.

This is pretty normal for any hormone you take- when you first start, you may find yourself experiencing mood swings and feeling emotions more intensely. That's why kids deep into puberty tend to be, um, a bit out of control with their emotions. It's also why this happens again as you age into your twilight years, when your body once again changes its hormone output and can set things a bit out of whack. Or if you get pregnant. Or if you start hormonal birth control. Or if you take a steroid for something not even sex hormone related. Messing with your hormones can seriously throw off your grasp on your feelings and moods.

But the good news is, it's not permenant. By the time you're 5 months in, you should start feeling more like "you" again, unless your dose changes for whatever reason. And, even better, the "you" you feel like? Usually is a much more mentally happy person.

On a personal level, I didn't have random fits of anger. Which is interesting, because I have a documented anger problem that I have taken anger management for because I have had black-out rages [usually inspired by one of my sisters deliberately hurting one of my pets] [for instance she swung one of my pet rats at the wall by the tail like she was going to kill him and the next thing I know our mother is pulling me off of her as I'm pummelling her face with my fists on the ground and I do not remember the in-between] [I'm not sorry, fuck around and find out, don't hurt my animals and I won't hurt you] [also this sister sent me to the ER in a previous fight where she'd bodily picked me up and thrown me through a window so like. Don't feel too bad for her that I finally snapped and gave her a taste of what she constantly did to me]

In fact, I've had *multiple* people who know the "before" and "after" tell me that I'm much calmer and more emotionally steady than I've ever been. And that I'm happier too. I also used to anger-cry a *lot*, pretty much any time I got angry I'd also cry, but that also stopped happening so now I don't really get angry and when I do I don't cry about it.

I would say anxiety's probably about the same but depression is much better. Compared to who I was before leaving my hometown vs now, I can confidently say that I no longer consider the odds of whether my shower curtain rod can hold me for long enough. I'm much better at recognizing when my mental health is getting bad and when I need to take a step back. I get stressed and I can go "okay, I need to break away from this before I completely lose it" well in advance. Which is great! Mental stability and joy and security for the win!

I will say I don't really cry anymore. It does occasionally feel like I'm not really able to. One of Creed's songs came on and I teared up and my throat got all fuzzy but I think only one of two tears actually came out, vs losing him pre-T we're talking ugly cry scream-sobbing in my [now-ex]'s arms. Which, yes, some of it is just distance from the grief since it was two years ago. But also I've never been so in control that I only cried a literal couple tears' worth. Usually the waterworks start and then take a long time to end.

[queen-mabs-revenge]

so she's got t-cell lymphoma -- at least we have an answer now.

(pet illness / end of life thoughts under the cut)

vet's going to have a consult with the lab oncologist tomorrow to get her staging and prognosis and a suggested treatment plan, but i'm not convinced she's well enough to go through with any of that, and with the way the vet is such a site of stress for her, i don't know if it'd even be humane to go ahead with that.

i'll get more info tomorrow, but i'm pretty resigned to the idea that a dose of steroids (prednisolone) just to give her a bit of relief and then planning for a goodbye is the kindest thing at this stage

[traincarsandstars]

"I would like to make a service announcement: Mara does NOT cause male-pollinated baldness; the condition is genetic."

"Other forms of hair loss are caused by diseases like anemia or a thyroid problem, radiation or chemotherapy treatments, medications, such as blood thinners, high doses of vitamin A, and steroids that some men take to help build muscle, called anabolic steroids, scalp infections, problems with your diet, like getting too little iron or too much vitamin A, stress, and keeping hairstyles like tight ponytails, cornrows, or braids for many years."

"If you are experiencing hair loss or any issues I listed, please visit the Alchemy Commission for treatment. Thank you."

[pocketsizedowls]

The first time I read The Metamorphosis by Franz Kafka, I was in my second year of college.

At the time, despite going to a university that was a 12-hour drive away, I faithfully returned home during every break, every holiday, and every long weekend. Much like Gregor Samsa, the protagonist of The Metamorphosis and breadwinner of the Samsa household, I thought my family needed me. They couldn't function without me. Texts and calls flooded in every day from my siblings, my mother, my father, so at the end of my second year of college, I wrote a creative nonfiction essay about The Metamophosis. My family is not like Samsa's, I claimed. Even if I get transformed into a bug like Samsa did, they would never faint at the sight of me. They accepted me each and every time I returned home from college, slightly changed from the last but still human at my core. They loved me, I said. They always will.

The recent release of Teniwoha's "Zamuza" via Project Sekai's N25 brought me back to that essay, and upon rereading it for the first time since I wrote it four years ago, I... pity myself. At 19, I had not yet come to terms with my family's dysfunction, my mother's narcissism, and my father's neglect. Being parentified growing up often means that you're the last of your siblings to realize you were cheated of a proper childhood, and that growing up too quickly has detrimental consequences on your health. Cortisol, the steroid hormone released into your body during long periods of stress, is only good for your body in smaller doses. Today, I am writing this post at 6am after rolling around in bed for hours, stuck in the limbo of waking and sleeping. Unfortunately, insomnia is only one of the issues that arise in adulthood after living in fight-or-flight mode your entire life. I would love to tell you more, but that would make this post way too long, so let's move on to the interesting stuff:

I see a lot of my younger self in Mafuyu Asahina, who puts on a "good girl" facade her entire life in order to meet the expectations of her demanding parents. By that I mean, she sacrifices her happiness and her identity to secure love and empathy from her mother, and boy do I know helpless that feeling can be. I only wish that when I was in high school, I also had good friends like Kanade, Mizuki, and Ena. That it didn't take me so long to realize that I am not responsible for my parents' emotions and that I did not need to take on adult responsibilities at a young age to be loved. Because love, as most people learn at a young age and I learned when I was a little older, is supposed to be unconditional.

Gregor Samsa, who transformed into a bug at the beginning of the story, died at the end of The Metamorphosis due to familial neglect. After sacrificing his entire life and identity to serve his family, they moved on quickly without him once he was no longer useful as their golden child. This would have been my fate, had I not pivoted my priorities later on during college to focus on myself. This would have been Mafuyu's fate, if not for her good friends who are unconditionally invested in her well-being. The song "Zamuza" is inspired by The Metamorphosis, and the song is often called "Samsa" when referred to in English. A tribute to Samsa, I think this song is not only Kanade's attempt to save Mafuyu, but also her way of making sure that Samsa, despite being forgotten by his family, will continue to be remembered by her audience.

Take a listen, if you haven't yet:

[trans-axolotl]

do you know anything about late-onset congenital adrenal hyperplasia? i just found it on my file while looking for something else. i have an unrelated surgery coming up and i'm trying to figure out if this could have any effect on how my body handles that, especially wrt cortisol. but i can't find much on it at all, particularly how it affects ppl beyond infertility and sex characteristics. my impression is that at least the classic variant of it sounds like something intersex-related so i thought you might have heard of it. i remember asking my doctors for more information and they were basically like "don't worry about it unless you wanna get pregnant :)"

Hey anon.

So, late onset congenital adrenal hyperplasia, also called nonclassic congenital adrenal hyperplasia, is considered an intersex variation. (If you search NCAH on my blog or on @intersex-support, you might find some other posts about it). Because of the way it affects our testosterone levels and secondary sex characteristics outside of what is typically considered "female", late onset CAH is intersex, even if late onset CAH hasn't caused changes in genitalia.

Of course, there's no pressure to instantly start referring to yourself as intersex, or start participating in intersex community, but know that you are welcome here, and there are a lot of people who understand what it's like. I also have CAH, and I'm always happy to talk about it with anyone else. I know that it can be sort of shocking or overwhelming to get that information for the first time. Any feelings you have about it are completely valid. You can take as much time as you need to process. The community is here for you whenever you're ready.

In terms of surgery and CAH, there are some important considerations. For people with NCAH, there's going to be a range for how each individual makes and processes cortisol and aldosterone. Some people need daily glucocorticoid replacement therapy while others do not. However, even if you do not need daily steroid replacement, some people with NCAH need extra "stress dosing" of glucocorticoids when their body is under physical stress, such as during illness, injury, or surgery. It would be really important to talk to your surgeon, an anesthesiologist, and probably an endocrinologist before the surgery to make sure you know what your cortisol and aldosterone production is and make a plan if you need stress dosing during surgery or surgery recovery.

One book I would recommend for people with CAH is the Parent's Guide to CAH. In a lot of ways this book kind of sucks--it's directed towards parents, uses a lot of cissexist language, and uses a very medicalized model, but has some of the clearest nonacademic writing about what CAH is, how it works, treatment options, and talks about different considerations like surgery, illness, etc.

Please feel free to reach back out with any other questions, whether it's about CAH, intersex stuff, or if you want suggestions on any other resources. Thinking of you, anon, and hope your surgery goes well! 💜💛💜

[fe-fictions]

I can't believe I have to post about this a second time in a year, but I have another sick kitty...

We lost our senior cat Henry in February, it was just time for him to go. He was a handsome and wonderful 14 years old, and had been with us since we were children.

And not long after we lost him, my sibling and I (we live together) decided the apartment was just too empty without him...we were missing the warmth and the joy that a sweet kitty cat brought with him.

So we each adopted our very own cats; a handsome long-haired 3 month old boy named Gojo, and a beautiful short-haired 5 month old girl named Luisa.

Luisa is my baby girl. She was born in September, the same month as me, and she's my whole world. But the last few days, she's been eating less, playing less, and getting more and more docile and lethargic.

I took her to the emergency vet today because she wasn't eating at all and was hiding since yesterday morning. He told me that she had an auto immune disorder, and was extremely anemic.

He gave me three options; try steroids and antibiotics, see if she responds to them, or they could hospitalize her and give her a blood transfusion, which was way, way too expensive...if I had the money I would've done it in a heartbeat, and it breaks my heart to think that I could've done more for her if I had a better job and could provide for my baby more. And the third option was to put her to sleep there, because her odds were slim.

I chose the option to get her medication, which was a quarter the cost of a hospitalization, and he assured me typically saw really good results, but that sometimes it would take a few days or a week or two before seeing improvement.

I gave her the first dose as soon as we got home, got her set up in my room, but she's still not eating, won't go to the bathroom, and I'm just really, really worried that I'm gonna have to say goodbye to her, before she's even a year old.

I'm just not ready to say goodbye again. Twice in the same year, two of my sweet babies. I am not ready to do that again. It happened so fast. The shelter I got her at likely had no idea she was sick; she showed no signs of it until just a few days ago. I hate that she's so fragile, and that I can't do enough for her. It's just crushing.

I want to try and focus on the positive, and hope that she's gonna pull through in the next few days. I'm just so sad, because it wasn't that long ago I saw this behavior in a dying cat. I know what it looks like, I felt it, I could see it. And I'm not ready to do that again.

I was supposed to have at least ten years with this slinky little baby. I don't want to believe that I'm gonna have to say goodbye to her. I won't know for at least a few days; but if she stops eating and she can't go to the bathroom, I don't know where to go from there.

I just wanted to vent, I wanted to let you all know that's what I'm dealing with right now. I hope you'll continue to have patience with me, and to those who commissioned art from me, I'm gonna work hard to get it done ASAP since it's already been a while, and I just need to do something to keep my mind off of what's going on right now.

But yeah. That's what's going on at this moment, and so if I sort of disappear for a little while or my posts go a while without anything, that's why.

Thanks for being so sweet, you guys are such a wonderful group of fellow FE enthusiasts and I love writing for you all. It's without a doubt the group of the friendliest and sweetest people I've ever run into; whenever awful things were going on, IRL or online, I would always come here because the drama or the stressful mess would never reach it; this place is my little safe haven haha

So thank you for being here, and thank you for listening and for your patience! I'll do everything I can to keep up.

- chiyo

[leafened]

learned that the issue i have where i "go insane" and feel like my body and brain is on fire and can't sleep/ dissociate/become agoraphobic/ feel like I'm being tortured to the point that I have to boil my skin off in a bath or apply ice everywhere and scream/hit/claw myself/drive all night and sleep in my car to get a sliver of relief is because of something called Akathesia that is known to be triggered by tons of antipsychotics and bipolar meds as well as certain antibiotics and steroids.

the symptoms vary and the syndrome is notoriously hard to describe in words, but the one common description patients give is that they feel like they're being mentally and physically tortured. After Cipro last year I was so desperate I ended up soaking my feet in Epsom salts for 8 hours a day (magnesium definitely helps tamp down symptoms), and when I last had prednisone I by all definitions went totally insane the entire course and a while after the course was over. I dealt with this for years straight in high school, probably bc of antibiotics (varying intensity but often completely unbearable, i ended up suicidal and homicidal (typical for the syndrome)) and the most fucked up part is that I've been keeping bipolar meds on the table in case the mania comes back, but an estimated 20% of people end up with Akathesia from bipolar meds, and some never come back from it even after quitting meds. Antipsychotics are even worse, studies show 40-60% of patients on antipsychotics met the diagnostic criteria. and the symptoms just look like insane person shit, so basically zero chance your psychiatrist will work with you to quit them, they'll just up your dose or switch to a med that does the same thing. withdrawal actually makes the symptoms worse, so even if you do manage to quit, you'll probably end up with a prescription again

overall I had maybe 3 years since puberty where I primarily got only nighttime symptoms and only 1 year of no symptoms at all. looking back the Cipro+Prednisone I took 3 years ago for chronic ear infections probably triggered this resurgence, and I had to take Cipro AGAIN 2 months ago for a UTI (amplifying the episode frequency once more). I'm going to keep having those types of risk exposure my whole life and I already spend a good 1/5 of my time actively in an episode. I don't want to add to that

Bonus being I only discovered this bc I've been frequenting antipsych and anti therapy forums. Doctors do not care about people and want the mentally ill and other "problem patients" to die

I also wonder how many people w "slam your head into the wall" style autism are dealing with this. one of the most common presentations is a need for continual movement. I read a South African study a while back showing that therapeutic doses of magnesium+potassium (important to have both bc one uses up the other or smth in periods of stress, don't feel like looking it up rn) significantly reduced repetitive stress behaviors in autistic kids. But magnesium and potassium aren't profitable so why would the industry recommend them.

[tj-crochets]

It’s time to make coasters from a bunch of HSTs from the box of scraps I got!

I’m aiming for 4” ish square, and I’m making A Bunch so I can give them to my endocrinologist’s entire staff because they have hugely improved my quality of life. Like. By leaps and bounds. I’d make them all full quilts if I knew how many people worked there but that’s maybe a little much so quilted coasters it is! And maybe some quilted mug cozies!

[deadmomjokes]

oh wow I am so sorry to hear about your daughter having EOE - that sounds really rough. How do you navigate that?

At this point, with a lot of flailing.

It took 3.5 years to even get her properly diagnosed, not through lack of trying-- it's just a hard thing to differentiate, and the specialists that can actually do the test are dealing with a huge number of patients so they're always backed up. We're lucky: we live only an hour from the state children's hospital where they can do the diagnostic procedures, and it has a dedicated EOE specialty clinic that's one of the best in the country. It still takes 2 months to get an appointment as an established patient, and it took even longer to get her in on the initial referral. We're also lucky that she was able to explain to us what she was experiencing in a way that a doctor could take seriously and act on, and we're lucky that her primary care doctor did so.

But generally speaking, things suck spectacularly for pediatric EOE and GERD patients right now, at least in the US. The best medicine for treating it is omeprazole (prilosec), and there was exactly one manufacturer that made it in a suspension that small children could take. Well, that manufacturer decided it wasn't profitable enough, so they quit making it altogether. So now the next best, lansoprazole (prevacid), is on national back order for months because every child that was on the other one is now needing to switch.

So my daughter is currently on the next next best thing, because it was that or nothing, and it's just not working great for her. It keeps her from the worst of the pain, but she's back to not wanting to eat anything but bagels, one specific brand of cereal, and string cheese.

Back when she was officially diagnosed, her doctor gave us the option of going on a super dose of PPI meds, jumping straight to the steroids, or doing a full elimination diet with a nutritionist. For a kid, none of those options are great.

The PPIs reduce absorption of nutrients, which are already few and far between for a growing person with only a few tolerated foods. The steroids may have effects on a growing liver and kidneys, and also make you more prone to fungal infections and upper respiratory illnesses. Both have to be routinely dose-adjusted because the child is growing constantly, but you have to get an official weight/height check at the specialist to do so, which is always backed up. Then the elimination diet is...well, it's hard, to put it mildly, and it takes a really long time because of how delayed the reactions can be. Plus when you already don't like eating and only have a few 'safe foods', it's hard to cut back. Most people with EOE also have more than one trigger, so you have to eliminate a ton of things and hope you get them all, and you can't be on any medication while you're doing it because you have to be able to identify the point at which symptoms get better and then return.

In short, all the options suck.

We eventually decided on trying to get it under control enough with the meds to hopefully expand the foods she was willing to eat, in preparation for doing the elimination diet. It was working. Then the forced medication switch blew that all up. So we're just gonna grit our teeth and go with the elimination diet unless her specialist has another option for us.

But aside from that, it's been a lot of phone tag and appointment waiting, and a lot of readjusting the way we look at food and eating.

For her, whatever she will eat is a win. We've taken pressure off her to try new things. We still offer it, but we don't press if she's not feeling up to it. Reducing stress around the concept of trying new foods is super important, because she's already up against the stress of wondering whether it'll 'get stuck' or feel yucky or make 'the fires' worse.

We've also had to make sure we don't fall into the trap of trying to dictate how much she eats and when. Unless a meal is coming within the half hour, we let her have a snack when she's hungry-- wait too long, and she's in pain. Plus we want her to kind of train herself to respond to those hunger cues because her appetite can get so drastically reduced at times, every instance of her listening to an 'I'm hungry' is a win.

We also had to abandon the idea of the 'perfectly' balanced diet. Proteins are a struggle for her. Leafy greens are a struggle. So are other calcium containing foods like dairy and dairy alternatives. She really only likes carbs, mostly bread and fruit. But it's not like she can help it. Nobody purposefully restricts their diet just to be difficult-- a "picky eater" is someone who is struggling and needs accommodation, not judgement.

So we let her eat what she will eat, and work to find options that can get her the stuff she needs. Protein bars are a big hit with her right now, for example. A better texture than meat, they come in 'treat' flavors, and there are options that don't have all the added sugar that's gonna trigger the acid flareup. We make sure we get enriched flour and bread products so she gets at least some iron. We pick varieties that have added protein and calcium. We get juice with added vitamins and minerals. We stock the pantry with things that cater to her capabilities and needs wherever the two overlap. The goal is nutrition, whatever form that takes and whatever it looks like right now. Getting it "right" will come later. For now, we just need her to be comfortable with food and to learn how to work with her body.

This has also meant teaching her about nutrition, so we can help her take charge of her body's needs and help us think of ways to meet them. That's hard for a 3 year old, but there's a show called Storybots on Netflix, and they have a great episode on nutrition called "Why can't I eat dessert all the time?" Super accessible for kids, and has a catchy song describing macronutrient categories and why we need lots of different kinds of food, not just one kind. It was a perfect starting point, and we just kept at the explanations. Like when we would eat an apple with breakfast, we'd talk about how it has Vitamin C to help her cells be strong, fiber to help her tummy and intestines work well, and carbohydrates to help her have energy. Every time we try a new food, we talk about what's in it to help her body. That includes things like chips and cake--we're big on the concept of "all food has value, it's just some has more than others, so we eat the most of those."

So now, when she's had a "just bread" day we remind her that her body needs more than just carbs, and we can't get all our protein, fats, vitamins, and minerals from bread, so we should probably have something else too. 9 times out of 10, she'll add something to her request, like some blueberries or carrots. She might not eat a ton of it, but she tries, and that's what counts.

I know this is a mile long and probably way more than you were asking, but it's just one of those things that I have a lot to say about. I could talk all day about accessible eating and nutrition, as well as Going Off on our current medical system in the US, so if anyone has further questions, feel free to reach out.

[kirby-the-gorb]

I just bought myself a manga about the artist going through severe illness and I found it comforting to read someone else's experience, so I thought maybe I would share a little about my experience with MCAS again. so here's all the pills I take!

cromolyn. 2 ampules mixed with water 4x/day (although I'm often out of bed for 12 hours or less and have trouble keeping track of time, so often it's 3x instead). mast cell stabilizer.

multivitamin. I only took this for a week so far and stopped to gather data. (my paranoia was getting bad, which often means I'm reacting to a med. this is a cheap one with many fillers.) meant to make up for difficulty accessing food and possible malabsorption.

fludrocortisone. 2 pills a day. for POTS.

atenolol. 1 per day. also for POTS.

montelukast. 1 per day. technically for asthma, but works by blocking one of the signals the mast cells send.

loratadine (aka claritin). 1 pill 2x/day, which we had to fight the insurance about after a while. antihistamine, meant to prevent anaphylaxis by blocking a different mast cell signal.

aspirin. 2 pills 2x/day. to reduce inflammation and control chronic pain.

whichever oral hormonal birth control my insurance will give me (it varies). 1 per day. menstruation makes my MCAS flare and I still have incomplete cessation even after an ablation, so I keep taking it even when not putting myself at risk of pregnancy.

dye-free diphenhydramine (aka benadryl). another antihistamine, taken when my MCAS flares to reduce or completely end the symptoms. (the pink dye in the regular formulation is actually a very common trigger.)

low-dose prednisone. steroid kept on hand for unavoidably high-demand occasions (like moving across the country) or unshakable prolonged flares (like, a week).

that's 8 pills in the morning, 3-4 at night, 8 ampules in the day, and 2 different emergency meds. plus I try to drink a gatorlyte every day (also good for POTS and certain mineral shortages) and try to avoid triggers (including heat, stress, and overexertion -n- )

3 and 4 were the first meds that ever made me feel any better, before we'd figured out it was MCAS. (likely with secondary POTS/EDS.) 6 and 7 are the first line treatment for MCAS, they're the first medications I actually took *for* it. they are often used in combination with famotidine (aka pepcid) but that made my paranoia super bad so I stopped taking that one.

this was my regimen established before I got covid last july, which made my MCAS much worse, which also made it impossible to get a new doc post-move since I can't physically get to an appt. so this is likely to change once I have medical care again. being sick is a lot of work!

[echologname]

🚨Overdosing on your inhaler⚠️

The doctor I spoke with said inhaler ODing isn't well researched because most people don't over do it. However, it does happen to some asthmatic individuals, especially during desperate times. This was my experience and I hope to God no one will have to suffer the side effects like I have been the past few weeks. 😭

It started when I got a horrible cold and with my asthma, even a small upper respiratory infection suffocates me. With this big one, I was having asthma attacks too often to sleep for 3 days, the night before I ODed, I fell asleep on the bathroom floor because I needed the steam to sooth my lungs because I COULDN'T catch my breath, I would just keep coughing so much that I'd gag on trying to inhale. So, sleep deprivation was probably a factor in my poor judgement. I was taking Advair, a 12 hr inhaler and I got confused with the Albuterol, a 4 hr that's safe to take multiple puffs of if I NEED it to continue breathing. I was supposed to take 2 MAX of the Advair out of the entire day but instead I took 6 or more (I wasn't keeping track, I was too tired and spacey). That night, (exactly one week before Thanksgiving) I suddenly felt like my whole body was on fire, my heart was racing, I was shaking, pupils were dilated, I felt like I was dying a horrible death and wanted to go to the ER but my mom assured me I was fine and I just needed to wait for the steroids to pass out of my system. So, I just laid on the floor of my parent's bedroom all night going through the worst experience I've EVER gone through (kidney stone is a close second).

I use the Albuterol as a rescue inhaler because it's fast acting, it contains beta-agonists which reduce inflammation and bronchoconstriction to help increase airflow through the tubules in the lungs called bronchioles which get inflamed and restricted due to triggers aggravating them like a virus.

I've never taken Advair before, insurance suddenly decided Dulera (and before that, Symbicort) was no longer supported. Anyway, I misheard the directions when they were given to me verbally (God, the one time my autistic brain is too tired to process, it could have killed me!😵) and thought taking multiple was safe (the directions aren't on the inhaler itself, it's on the box that was thrown out). Anyway, these types of inhalers are only for preventative measures to make the bronchioles less sensitive to triggers and are a corticolsteroid.

So, inhalers aren't a medication that magically makes you less asthmatic, it's artificial cortisol, the stress hormone. It targets your nervous system and purposefully gives you mild stress (if you took the correct dosage, this wouldn't be as noticable) so your body's survival instincts will keep you from suffocating.

If you have allergies, you may be familiar with an EpiPen. They contain epinephrine which is artificial adrenaline and works the same way. Taking a dose of epinephrine is dangerous which is why it's ONLY used in emergencies and why you ALWAYS call 911 after using it.

So, the side effects of inhalers:

From Albuterol's website:

Nervousness or shakiness, headache, throat or nasal irritation, and muscle aches. More-serious — though less common — side effects include a rapid heart rate, called tachycardia, or feelings of fluttering or a pounding heart, called palpitations.

So, that explains a lot. 😨

And for Advair:

Upper respiratory tract infection, throat irritation, hoarseness and voice changes, thrush in your mouth or throat, bronchitis, cough, headache, and nausea and vomiting. In children with asthma, infections in the ear, nose, and throat are common.

I also read that some side effects of an inhaler can be seizures. Thank God that didn't happen.😬

What I've been personally experiencing weeks after the incident:

Coughing and tightness in my lungs and insomnia (how ironic this started because I was coughing so much and losing sleep over it. Now I've hardly slept in weeks). My chest has been hurting like CRAZY non-stop. Headaches and sharp pain for muscle cramps. My kidney where I had a kidney stone 3 years ago aches. Basically, every inch if my body hurts all the time, some parts much more than others. And WORST of all, episodes of reoccurring symptoms from that night where I feel like I'm dying again.

The panic attacks:

I never realized how disabling these Hellish experiences are! I can't function, my nerves are haywire and I feel like I'm in desperate need of medical attention. My chest pain has worsened, heart rate increased, a burning sensation in my chest (I assume it's the nerves themselves being inflamed) and I can't help but shake.

After following up with a doctor:

So, during one particularly bad panic attack, I was on the floor writhing in pain and crying, begging to be driven to the ER. They did an EKG, bedside echocardiogram, x-rays and blood tests and couldn't find anything wrong and diagnosed it as anxiety. Yeah, I've had moments when I'm really nervous or worried and might have called it anxiety at the time but this was WAY worse. It didn't seem triggered by any thoughts, it just happened whenever I'd try to be sleeping or watching a cartoon. It was explained to me that my BODY is traumatized, not necessarily my mind and it's coping and trying to protect itself by replaying the same horrible symptoms. I did follow up with my doctor's assistant who prescribed me anxiety meds and said the anti-depressants my GI prescribed for my IBS would work fine to start taking daily. She also referred to a therapist and I asked for a doctor's note to take my untrained service dog prospect to school with me as an ESA (the ADA only allows public access to fully trained service dogs and NOT ESAs but my school has an exception to that).

It's probably going to take a while to finally feel fine again, but, I'm glad I'm not dead, I learned A LOT and I'm slowly healing every day, even when I still feel awful. Also, I have a loving supportive family and dogs that take care of and comfort me. And I've never been more thankful this Thanksgiving for them and that I'll get to have a merry Christmas with them too.❤️

...

Side note: the day after ODing, I suddenly felt like I didn't have a cold anymore. I hypothesize because my body was under SO MUCH stress, it flooded itself with white blood cells as a response to being in survival mode which KOed the virus. When I had my kidney stone, I was in such immense pain, my white blood cell count was abnormally high which initially concerned the doctors until they concluded it was probably from the pain and stress my poor body was enduring.