#chronic adrenal insufficiency

[evilwriter37]

Sharing some of my experience living with a rare disease. (And you get to see my adorable face.)

[whatshouldwecallchronicillness]

When the med I need to survive is only produced because the gov tells Pfizer they have to continue production and the gov is currently crumbling...

[thechronicpaingame]

Today I learned about achenbach syndrome! Ive always had this weird thing with my hands where I get this like spiky pain and it hurts to touch the skin and later on it's bruised (on the inside of my fingers). So when it happened today I decided to have a Google and voila! It's nothing exciting, I just find it so interesting when I find something that's like, oh yeah it's definitely that haha. Medical stuff is my specialist interest and I think always will be haha.

[notavampiretrustme]

“Maybe you should stop spending so much time on your phone”

“it’s not sustainable to order out so much”

“If you have so little energy why do you still go out on the weekends?”

SHUT UP SHUT UP SHUT UP! It’s hard enough for me to exist already don’t you dare suggest I give up the few pleasures that make life worth living just because I’m sick. Don’t you dare question my priorities when you don’t live in a world where you have to sacrifice one basic aspect of life for another.

[tea-and-spoons]

If you made a mistake (or two or five or hundreds) in your medical care, you are still a good person. You still deserve care, you still deserve to feel better 💙

[seasonallydefective]

[Some minor medical trauma and general frustration over Dx stuff … someone please convince me to keep trying 😭]

I have an appointment on Tuesday to talk to my doctor about getting some tests done for something that seems likely to be the missing piece of my chronic illness puzzle. But now I just want to cancel it and stay the same level of miserable that I’ve been for years …

I’d posted on a forum detailing my situation and asking if there are any other tests I should have run to rule out mimic illnesses, and should I go off all my meds before the tests. One person replied, answered none of my questions, and instead got on me about how “you shouldn’t put much stock in how you feel on prednisone because it makes everyone feel invincible”.

I hate this line of thinking because I’ve had it snidely said to me so many times, by doctors who told me to shut up and be happy my pain was only averaging a 6 daily. I am also beginning to think that it is NOT TRUE because I know a lot of people who don’t feel better on steroids, or who feel awful initially.

I also didn’t say I felt invincible — I said that when I took my tiny MCAS rescue dose of prednisone I felt normal, that I could go grocery shopping without having to sit down and that I could actually think clearly. I said that the moment I stopped my 5mg/day rescue steroids, I was hit with joint pain, muscle spasms, fatigue and brain fog so bad I can’t function, and horrific headaches.

I’m back to feeling like a stupid hypochondriac again and I don’t want to talk to my doctor. I’ll just give up on getting anything that will help me, run out of my rescue steroids, and wait to be jobless again when I can’t function because I guess everything happening to me is normal and fine 🫠

[rattiemattie]

Part of a series I'm working on for a show next year

[verysickyvicky]

This is what Pfizer wanted kept under wraps for 75 years: the 'safe and effective vaccine' with 9 pages of side effects.

If you're chronically ill, you have pharma to thank for it. They had to keep the money flowing somehow. So they just made illnesses happen so they can milk us!

https://x.com/CartlandDavid/status/1882774184096592164?s=19

[b-ditto]

*friend sees my tattoo*

Me: Yeah it's just a medical tattoo,

Friend: 😃 Adrenaline junkie.

That's hilarious and I love you.

[teethwasbones]

Hypopituitarism isn't talked about enough and it's really frustrating. I basically never see it get acknowledged online and not a singular doctor I've ever had understands it and they keep trying to do things that will make my condition worse bc they won't listen to me about it so I have to fucking send giant articles about why they can't reduce my meds based on certain tests bc those tests are only for people with primary endocrine issues (primary hypothyroidism, primary adrenal insufficiency/ addisons) not secondary endocrine issues like secondary hypothyroidism and secondary adrenal insufficiency and arent useable for people like me.

It took me years to get diagnosed and I have permanent neurological damage from my thyroid and adrenal hormones being too low for so long. I'm not about to reduce my meds that make me feel better bc a doctor who doesn't know crap about my condition won't listen to me

Not to mention my case is even more uncommon bc it's not caused by anything they normally test for. (Tumor, and sometimes certain pregnancy complications can cause it, neither are true in my case).

And I don't even have someone I can talk to about it that understands what its like, because I never see anyone talking about it. I feel alone and scared.

[evilwriter37]

Laying in bed with no energy is really fucking boring, y’all.

[whatshouldwecallchronicillness]

My reaction to my own government trying to erase me...

[thechronicpaingame]

[x22817]

Herz got to have her new comfy bed to lay on at my endocrinologist appointment today!

I think the appointment went really well. We discussed the vertigo issues that have been re-emerging along with the joint pain. She wants me to slow down on my taper, so I'm going to stay at this dose for a couple of months. I need to keep my patience hat on and not rush into anything. I'm so used to pushing through feeling bad that I am rushing taper, thus not giving my body the time it needs to adjust.

We're doing a LOT of bloodwork: full thyroid panel, adrenals, testosterone (no point in doing estrogen since my menstrual cycle is regular for the first time in my life), vitamins, minerals, electrolytes, and DHEA

I LOVE not producing hormones *sarcasm*

Having a doctor who actually listens to me and is willing to work with me is such a game changer.

[snapcracklepop-myjoints]

I think the worst combination of chronic illnesses has got to be, hands down, condition that makes you violently ill at least once a week (various), and condition that makes throwing up potentially super dangerous (adrenal insufficiency) like jeez let fucking puke in peace 😭 wtf

[house-of-slayterr]

Why the hell do my adrenal glands need to be attach my fucking kidneys, I know they live on top of them but can I fucking live. It feels like my god damn organs are being ripped out 😭