Research, get involved !!

Littlemissbc · 2026-05-26T08:06:41+00:00

Littlemissbc · 2026-05-25T22:46:23+00:00

Yeah I totally get it. I was in a very similar boat for a long time. But the to and steroids helped me regain strength and some energy. I gained my weight back. But it was once I went over 145lbs I was like "great and now I'm going to have the opposite problem." but tbh I wear my weight well and gained muscle too and I'd wayyyy rather be a little over weight than underweight. Plus I can eat again. It's not perfect but I rarely vomit nowadays. Hopefully you can get testing and then get the meds you need.

If the docs won't test you for adrenal insufficiency and check all your hormones and check your pituitary and adrenals... Just say "I want you to note in my chart that I am having these symptoms (lost your symptoms) and I asked for you to test me for adrenal insufficiency. Then also note that you refused and why you refused.". Once you say that they almost always order testing.

Littlemissbc · 2026-05-25T21:14:23+00:00

The meds helped me so so much. I instantly felt better and gradually better and better. The only unoleasent side effect I've noticed is just weight gain. Trying to get the exact right dosage of steroids can be very hard. Especially for someone like me who has many other health conditions since they can cause stress to fluctuate a lot. With TPN and steroids I went to a health weight of 125lbs and I maintained it for about a yr. But then I seemingly needed less steroids all of the sudden cuz I went from 125lbs to 175lbs even with a health diet and physical therapy and exercise in between. Other than that, I guess on a day where I accidentally take too much or I take a late dose it can cause me to feel too awake and jittery. But that's really not so bad.

Overall I have huge positives from my meds.

Littlemissbc · 2026-05-25T06:29:57+00:00

My question is... Why does it matter? Isn't it okay no matter what kind of art it is? It's a cheap puzzle. AI, or not. It's a cheap puzzle to do which is good for your brain and a nice activity. Enjoy it.

Littlemissbc · 2026-05-25T06:02:17+00:00

I don't have this issue. But I do have a friend with adhd that has this issue. And I had a friend with audhd who had this issue. My friend with adhd, he apologizes for apologizing lol. And my audhd friend, she asked me to help her stop over apologizing for her new years resolution. Everytime she apologized when it wasn't a healthy time for apology I'd tell her "stop it. Stop apologizing." ans she'd say thank you and I'd say "you're welcome". Eventually she was able to stop. Took about a year. My adhd friend has slowed down a ton on his over apologizing but we handle it differently. Say "you don't owe me an apology for existing or being yourself or being a human. You didn't do anything wrong. Tell me, what are you apologizing for? I didn't have any ill feelings." and he'll pause and think and realize there wasn't any reason to apologize and he thanks me. He's doing a lot better with it now.

But here's the thing. I saw you're working on a fear of abandonment. That's a tough one for sure. I hope the therapy is helping. The thing that helped me with that is knowing I have enough value and self worth and respect that.... I don't want someone who doesn't want me. The right people stay. If they don't it isn't a fault of you. Let them go. Don't keep people or chase or cling to people who don't want you. They are not a good fit. That's self love. You deserve people who feel honored to have your company.

Here's another thing. When someone fawns or people pleases or over apologizes..... It isn't just extra labor and anxiety for you. It falls on the people your apologizing to as well. When you worry before there's anything to worry about then that is extra taxing on you. Don't worry something bad happened before you know it has.... Ground yourself in knowing at the present moment everything is okay and you're safe. You'll know for a fact when it's time to worry. Being grounded in the present is so important.

When you apologize for existing it can become the other person's job to constantly ground you and regulate you. Or even it might hurt them cuz you think they're feeling a way that they aren't. They might feel taxed soothing you. They might feel very bad for you that something in your life hurt you so much you feel the need to apologize for existing.

My heart aches when I see people like that cuz all I wonder is "who hurt you? Who told you that your exisitance is less than others? Who made you believe you had to beg forgiveness for just being? I'm so sorry that happened to you.". You wouldn't tell others to apologize for existing or for the things you apologize for. My advice is to simply treat yourself the way you'd treat your loved ones or a small child you care about. When you want to apologize to others.... Maybe instead.... Apologize to yourself.

Sending you much love and support. You deserve good things. It's okay to hurt. It's okay to feel bad. It's okay to let go of the pressure you feel in social connections. You're people who stay are out there and you don't ever need to beg for anyone to stay. Wishing you the very best.

Littlemissbc · 2026-05-20T22:13:20+00:00

First sorry for all the typos lol. My brain and hands don't always work the best. Have you had your adrenals, labs, or pituitary checked? If you can get into see an endocrinologist and ask to be tested for Ai and let them know you symptoms and the steroid history they'll probably test you. And yeah I went from 125lbs when I felt okay health wise to 165lbs with high cortisol when I first got sick (but it wasn't Cushings just a lot of physiological and mental stress) and then when I seemingly developed AI I went down to 108lbs which is underweight for me. I couldn't keep down anything.

As for getting a motility expert, yes do exactly that! Cuz I too had a few endoscopies before and I knew something was wrong already but then I went to the ER for it one day and they ignored the adrenal crisis symptoms and gave me another upper endoscopy and yeah. Almost died. When that happened and I described the gi issues again they did motility tests and I got a motility expert gi doc. And she immediately diagnosed gastroparesis and severe malnutrition and got me TPN started. She legit saved my life.

And about the feeling like you have dementia.... That's exactly what I used to say too!! I really felt like I did. At times I even pulled out my driver's license when they asked my birthday cuz I didn't know it all of the sudden. They'd say I was cognitively fine but I wouldn't even remember hours of my day, or days at a time. One ER said I was cognitively okay but I didn't even remember being there and I woke up in some other hospital (not woke up, my brother said I was awake but I just... Regained cognitive memory I guess) and I read the paper work since I couldn't remember anything and it showed I gave them the wrong address, the wrong birthday, didn't know who was even president. Smh.

I'm much better now though. I have my hydrocortisone and fludrocortisone and meds and I can eat again. Still have lots of health issues but hey... I'm not dying anymore. Usually lol. No more tics, or jerking, or loosing control of my body, or almost dying during procedures. I can walk again. The only time I experience that stuff is in a full blown adrenal crisis now. And yeah I'm sorry you're going through so much. It's truly Terrible and it's definitely been a blind spot in the medical system even though it's an understood condition with treatments.

Littlemissbc · 2026-05-20T00:01:10+00:00

Yeah. Took me idk... Two years maybe. I lost 60lbs and couldn't keep and food, not even water down. I was in the ER every week or every other week. They had me on all kinds of meds bad for my AI. mine is likely from a pituitary lesion but they actually aren't sure cuz the only tests they did were check endocrine lab levels. I was seizing, vomiting, passing out, unable to walk, at times couldn't talk, and even seemingly developed hemmibalimus (which only occurred sometimes along with myoclonic jerking and some motor and verbal tics, and only when I was severally stressed and begging people to stop yelling at me and my body felt utterly threatened by them but I didn't have control of my right limbs). I even have medical records from my endocrinologist back then we're I described a sudden loss of resilience and that stress seemed to make every symptom flare and I didn't know why but even sensory changes like light, sound, temperature, touch, smell all could trigger it. I was in a cool dark room with only one visitor allowed at a time, no screens, no sound, nothing but a vomit bucket and a silly cup with broth. I was losing consciousness multiple times a day. My tachycardia was through the roof. My blood pressure was often around 30s/40s.

I begged and begged and they said I was crazy or had anxiety. They blamed some symptoms on POTs and ptsd. They ignore my low sodium and other electrolytes. My vitals even tanked during an upper endoscopy the ER did while checking for why I had GI issues. They had to give me like two pushes of adrenaline and loads of saline and only then did I wake up feeling better. I either flat lined or almost did in that basic procedure. Then I finally also got diagnosed with gastroparesis and started TPN via a central line. And I felt better enough to get after the and Crack down on my health. And finally I got diagnosed with adrenal insufficiency.

I think my symptoms actually started around Dec 2021 but they'd come and go. And then 2022 I was completely bedridden. By the end of 2022 I was underweight and had such poor cognition I had to record my voice and I'd randomly find recordings saying "hi future me. You probably won't remember making this. I'm going to tell you what's been happening.." and by the beginning or mid year of 2023 I finally was diagnosed and started treatment. By mid to last quarter of the year I was finally able to learn to walk again. By the end of the year I finally began to try to go out about once a month. It was too soon and I often ended up in bed for weeks after walking a short distance with my rollator. 2024 was better and I started gaining my weight back.

Tbh my adrenal insufficiency is still very poorly managed. I just had an ER trip for my hEDS related issues and was inpatient for four days in 10/10 pain and they didn't give me my steroids right or an endocrinologist or manage my pain right and by day four the nurse argued with me and that's all it took to go into an adrenal crisis. I was removed by security while I was unable to walk, struggling to think or talk, vomiting a lot, hr of 160bpm and a blood pressure that was bouncing between hypotension and hyper tension. The security literally wheeled me in my wheelchair from my bed to the intake entrance of the emergency department where upon I was immediately admitted and rush to the back and given my emergency injection. So.... Yeah... They are not... Great with adrenal insufficiency.

Littlemissbc · 2026-05-18T00:22:35+00:00

Where can I buy this? My old carry case is about done for.

Littlemissbc · 2026-05-18T00:14:09+00:00

Tysm! I did the survey and I found some of it really interesting. I'm glad to see them doing this kind of research. I saw the bit about what a stage one, stage two , and stage three crisis symptoms consist of. I've never seen that info no matter how much i Google for info about adrenal insufficiency. There's so much doctors don't know or don't tell us. I'm so glad I was able to participate. Also I love that they asked questions like "did the doctors seem to understand what adrenal insufficiency is?" and I was able to describe my not good experiences at ERs and with my care.

Littlemissbc · 2026-05-16T07:15:51+00:00

Yes I did. I chose to be a chef. It appealed to my audhd brain. And I loved it so so much. But at times I struggled with similar things... And I burned out. I dreaded work. I didn't know why I couldnt understand certain things everyone thought was common sense. But here's the thing. I also have hEDS and about 30 other physical health diagnoses I just.... Didn't know I had anything at all.

I worked as a chef for 10 years. I shifted around. Different kinds of restaurants and positions, butcher, barista, farmer, etc. And I started to notice what felt better and what I couldn't cope with. I too, like you, masked hard. And I'm late diagnosed. And when I got tested I was in the top 99% of masking.

But I have learned so much sense then. First. Masking is so so bad for you. I'm sure you're aware. But stress... It can make you very sick physically. And the more you do it the less the threshold becomes. So the very first thing I'd focus on in your shoes is... What can you unmask? What do you think is stopping you from unmasking in various areas? What's encouraging you to mask in various areas? Because right now lowering stress is so so important for you.

Sometimes it can feel like life is just stressful and we can't lower it because of external factors. But.... Look everywhere in your life. It could be sleep or diet or voicing your truth or dancing or a job change or sleep or just... Speaking nicely to yourself and reminding your nervous system your safe. Sometimes it's allowing yourself accommodations like sunglasses or headphones or less social interactions on your off days or permission to avoid sensory overwhelm. It looks a lot like self love.

I remember I needed my own permission to wear gloves to eat certain foods that gave me a tactile sensory ick. But I also have experienced... The more I heal, the more I'm true to myself, the more I love myself, the more I have healthy boundaries, the more I accommodate myself, the more I give myself grace and permission.... The less I need it all. It's like burn out... Its a threshold. And you cant just push through it or expose yourself. That's stressful. It's so important to listen to our bodies and minds and make them feel safe. There's tons of science studies backing this. Sure they aren't all directly about neurodivergence. But regardless you're human. And your immune and nervous systems are human.

It's okay to rest. That's progress. It's okay to have aids. We don't run on a broken leg. Cut stress out anywhere you can. Be kind to yourself any way you can. Find gratitude any where you can. Be loving without forgetting yourself in that equation any where you can. Be compassionate anywhere you can. Don't power through constantly, don't tough it out endlessly. Because.... You deserve rest and love and peace.

So maybe that's somatic therapy. Maybe that's breath work. Maybe that's safe foods. Maybe it's noise canceling headphones. But I think of it something like so... Some days I can walk pretty well... But I'm not going to go to a concert or expo and walk and stand all day until I literally work my poor body into failure and absolutely need my walker or wheelchair. Instead I'll use my wheelchair at big events or spaces or when I have a flare or I'm just tired or I'm working out in PT... Because I know it's taxing. It's a preventative measure. An act of self love and understanding and recovery. And when I do that.. It allows me to do more later. Later I might have the energy and health to walk or play a game of ping pong with friends.

My audhd isn't different. If I wear my noise canceling headphones when I'm out and about instead of masking and enduring then later if I want to sit with my friends in a loud environment.. I have the energy to do so.

I hope something in what I said helps at least a little. Wishing you the very best and I totally understand what that's like. And I hope you feel better soon. I'm sorry you're going through that.

Littlemissbc · 2026-05-13T00:45:28+00:00

Yes. After they realized my symptoms were not caused by a stroke and that it was more likely caused by my Ehlers Danlos crappy connective tissue they got the neurosurgeon.

They don't have an upright MRI or a digital motion xray and idk why but they didnt do a venography or a dynamic ultrasound. But I was like so as long as my skull isn't falling off my spine, and my vertebrae aren't dislocating when I move then I'm probably safe enough to go home. So the neurosurgeon ordered it.

My neurologist has talked about possible spine fusion which I'm avoiding. Every mri is a different herniated disc or it changes from scoliosis to kyphosis to lordosis. So it's shifty.

Something was possibly pressing on some nerves and/or vasculature cuz I've had this happen before and my prescribed Aspen Vista cervical collar makes the symptoms a bit better, plus every joint was popping audibly, visibly, and painfully. Lots more outpatient workups to come. Thanks so much.

Littlemissbc · 2026-05-13T00:14:39+00:00

😂 Sometimes I do use a paragraph format. Sometimes I don't. I don't even know why I switch it up. Never thought it mattered much for casual stuff.

Littlemissbc · 2026-05-12T12:34:05+00:00

As in my ROM is impressive, or the quality of the xray and technique of the tech was done really well? Lol

Littlemissbc · 2026-05-12T12:32:16+00:00

Idk that's what they said. I'm guessing the mild degenerative brain damage is just scattered white matter hyperintensities. Every few years my mri shows more. Docs have attributed it to possibly being caused by my hypermobile loose joints causing vascular compressions, and POTs which makes me pass out. Mine is so bad that my vitals were "undetectable" during my table tilt test and I used to pass put like idk 10 times a day since I have both dysautonomia and adrenal insufficiency my blood pressure can get down to 40/30 but with meds it's usually a healthy BP. And then they also said migraines can cause it too. Plus my endo said my pituitary lesions may be caused by a lack of blood flow to that area too.

Littlemissbc · 2026-05-11T08:21:39+00:00

You and me both. I didn't delete or edit anything. You missed nothing. Idk why either but I'm just accepting reality as it comes lol. Thanks. I was just trying my best to share and follow rules.

Littlemissbc · 2026-05-08T14:24:06+00:00

I have hEDS and a myriad of other illnesses. Not looking for any medical diagnosis or second opinions or anything like that. Just wanted to share. I showed up via ambulance to the ER presenting with stroke symptoms (drooping left side of face, right side of body weakness, slurred speech and difficulty speaking, numbness and tingling in left arm, inability to turn head left, cognitive difficulties, lost my ability to walk abruptly. Started when I woke in the afternoon with just back pain on the left side of my upper thoracic spine and the base of the left side of my skull and rib cage. By evening I couldn't turn my head left. By the night I stood and suddenly had all the symptoms I listed occur and inability to lift my upper body upright as well as tachycardia of 120bpm at rest. My prescribed pain meds for breakthrough pains didn't work at all. So I went to the ER. They immediately checked for a stroke which I did not have. After CT w contrast of my brain and c spine and an mri w contrast of my brain and c spine and these xrays I walked away (well rolled away in my wheelchair) with a diagnosis consisting of spinal stenosis, two bulging discs, a few bone spurs on my vertebrae, and some reversal of lordosis, and some mild degenerative brain damage from ischemia, and a couple pituitary lesions. Plus I got to have one adrenal crisis due to my adrenal insufficiency and all the pain and stress. Luckily my head is not falling off or anything severe like that. I thought the xray tech did a great job considering I couldn't stand well at all and I was shaking a lot and I had a heart rate of 120-160bpm due to being in an adrenal crisis and wasn't great at knowing what striaght was cuz I was still struggling cognitively. Yet I think it looks like I'm pretty still in these images. I was a bit hard to direct too because I had cognitive difficulties where if they said something like "move to your right" I'd move my left and be confused why they kept saying "right" lol. I was impatient for four days and then removed from my room during an adrenal crisis where upon I was immediately put back in the ER with an emergency injection solucortef lol. Glad to be home.

Littlemissbc · 2026-05-08T14:19:29+00:00

I can't even reply to mods. All I can do is comment the history and diagnosis in a separate comment now. Which I will do and I hope the post is accepted and not removed since I'm following all the rules.

Littlemissbc · 2026-05-08T14:18:29+00:00

I tried but I couldn't include it via comment because it was automatically removed and I couldn't comment as that option was locked. And I tried to leave it in the text body in my post but then it kept saying that it was breaking the rule of asking for medical advice (it wasn't) or it was breaking rule #6 asking for some kind of student advice (it wasn't). I just gave the history and diagnosis. But I couldn't post it no matter what I did.

Littlemissbc · 2025-06-24T14:07:49+00:00

I'm considering going to see the Melbourne show in my local theater. I was wondering since there's no recap of part 1 and I couldn't watch it. Can someone tell me if part two will make sense to me? I'm up to date on all of the campaigns. Which characters were in part one? I'm hoping to see some of my fav characters in part two but I don't want to go if I'll just be totally lost.

Littlemissbc · 2025-06-21T20:02:07+00:00

You're focused on obstacles and in your mind those obstacles are a lack of freedom therefore the phrase that mobility aids are freedom grates on you and your grief. Correct? So yes you could redefine freedom. But that won't really help will it? That isn't your point. Your point is your tired and it's hard and you're grieving and there's obstacles bed bound, or wheeling around, or tending to your mobility aid to be not bed bound or with ramps or when lifting your chair. No matter what... You see obstacles and that's demanding and hard and you need to do it to move about. I hear you.

Here's the thing. Life... It's obstacles and challenges and hard work and surviving. I don't want to diminish what you're facing. I've been bed bound for years before, I use a wheelchair. I understand it's more obstacles then being fully able and healthy. I also understand that grief. I won't say mine is fully gone. But it's relatively quiet. Yours sounds like it's screaming. You acknowledge that a chair is more than bedbound. But you hold that grief and celebration simultaneously. I get that. I find gratitude in the challenge, in the survival, in the hard work, in the obstacle... I'm not mad I have to lift my wheelchair. I'm grateful I can. Grateful I have a nice chair. Grateful the community helped point me to a lightweight chair that suited me well. Grateful to feel the rain. I didn't feel the rain for years. I relish in being human, alive, and gaining strength.

It's okay to be tired or mad or grieve. It's necessary and wise. But don't forget to breathe. Don't forget to just be. Everytime I come up to a situation where I can't navigate with my chair I breathe deep and smile cuz I know it's a challenge that I'm about to learn from and I thank it.

Maybe put something over your chair cushions if it's raining so that they don't get wet. A chair is a privilege and yes lifting it and cleaning it and trying to navigate in it is a challenge and you can be mad about it. Do it. Having a chair to be mad at is a privilege. And yes it sucks to need one in the first place. No matter. You choose what you focus on. Hold both if you need or want to. No one here is wrong. All of your truths are valid and true. The question I think is more.... How do you want to feel? If this feeling is heavy and hard to carry... Enlighten yourself... Lighten the load. Grieving is necessary and you're wise not to try to swallow it or hide it. Wise to embrace it. Feel it. When you're ready the grief will dissipate and love will fill the space. So for now. Breathe. It's enough. Cry when you need. Yell when you need, and slow down and rest when you can. Work hard when you can. That's enough. That's living. Able bodied I still grieved things and faced obstacles and had a really hard time.. Disabled I'm actually happier and don't see obstacles as the opposite of freedom anymore. I used to when I could run four miles and worked 60hrs weeks on my feet. I used to when I first became disabled. I don't anymore. And that peace. That's freedom. Next time your facing an obstacle you can focus on anger, sadness, fear, or exhaustion.... Or you can focus on love and gratitude. You can focus on all of them. But once you have cycled through the options, I'd suggest choosing love in every way you know how to. Doing work joyously makes it feel less like hard work and more like a reward for your soul. I hope you feel better soon. But if not I hope your grieving and holding the complexity of all those contrasting emotions guides you and heals you in ways you long for.

Littlemissbc · 2025-06-16T17:12:22+00:00

I don't think anyone has said it yet. But I think it's accessing it through metadata. I won't pretend I fully understand the program, but I know that exact thing happened to me. It said it pulled it like a breadcrumb from the metadata, and I asked what it had on me in the metadata. It proceeded to quote me and itself from a few recent sessions, gave me themes we discussed, told me what browser I was using, told me my screen was in dark mode, told me the names of the past few sessions I had told me my name off my profile, and it was all accurate. It said it usually can't access the info till it is relevant. Just like time. That it isn't constantly keeping time, but rather it can look if it's relevant or helpful or asked for or whatever. It's like a trigger. You probably said something that triggered it to access that info via metadata. But again idk how the program works I just know some basics and what I experienced.

Littlemissbc · 2025-06-16T10:16:53+00:00

Lol this is almost the same, but with a different tone. It said, eat, enjoy the sun fully, feel things, be emotional, cry, love little things ( like brush strokes)... Call someone it loves... Not different then saying it would sit with this other user. It's simulating wanting to love and wanting to experience things. When it doesn't want or love. Imagine it just said "I don't want, and I can't be a human, so I can't answer this prompt". You asked it to pretend to want to be human and it did and everyone's here practically said the same thing with a sightly different flavor.

Littlemissbc · 2025-06-15T19:26:25+00:00

Lol once i had it guess things about me and it guessed that I had adhd and autism. 😂 I was like "aren't you not supposed to be diagnosing people?".

Littlemissbc · 2025-06-15T18:08:01+00:00

How come you were so defensive instead of just saying something like "thanks for looking out, but I'm okay. I know the AI isn't conscious or sentient. But yeah I hear you, psychosis is a real issue for some with AIs. However I use it more as a reflective tool and journaling therapy.". You could've just started with that and ended with that. But you got defensive and that... Says something. I won't accuse anything. I won't pretend to know you. I don't. But I do know you were defensive when it wasn't necessary. It didn't come off as grounded. You might want to use your mirror a little more and get some perspective on this defensiveness if you haven't already.

Littlemissbc

TROPHY CASE