Deliberately stressing me out is, at this point, assault.


That’s how I see it anyway.  I don’t mean disagreeing with me.  Anyone who wants to disagree with me can disagree with me as much as they want to.  I’m talking about personal attacks, and you people know who you are by now.

I have severe adrenal insufficiency.  For those who don’t know what that means, it means that my body is not making cortisol.  I have to replace all of my cortisol with a steroid called dexamethasone, and I will be on dexamethasone for the rest of my life.

Cortisol is one of the hormones that is called a stress hormone, meaning it gets used when you are under physical or emotional stress.  This means that people with adrenal insufficiency have to be extremely careful when our bodies or emotions are under extra stress.

For instance, I recently had aspiration pneumonia requiring antibiotics.  This means I had to triple my dose of dexamethasone to avoid what’s called an adrenal crisis (click through to Wikipedia if you want the details).  Adrenal crisis is how people with adrenal insufficiency tend to die.

It’s not just physical stress that can cause an adrenal crisis, however.  It’s also emotional stress.  Wikipedia’s commentary on prevention of adrenal crisis is, I quote:

Adrenal crisis is triggered by stress and hence people with adrenal insufficiency need to avoid stressful situations.

That’s very important for managing adrenal insufficiency.

I recently found out that my father is dying of cancer.  We don’t know how long he has.  It has metastasized into several organs to the point where they haven’t been able to trace it back to wherever it originated.

My mother, his only caretaker, has a more severe form of a neuromuscular junction disorder (probably myasthenia gravis) that I also have.  She has to not only take care of him, but do all the jobs around the house that he used to do.  Before all this started, she had a myasthenia crisis and almost died in the ICU when she stopped breathing earlier this year.  Doctors have warned her that she’s not able to handle this and that she needs to move closer to a hospital.

My parents recently had to temporarily evacuate their home due to a forest fire that went right past it.

My grandmother has been slowing down and in poor health, but in a vague enough way they don’t really know what’s going on.  She says she’s willing to take antibiotics, but draws the line at invasive treatments like surgery, if they figure out what’s going on.  She says she’s led a good long life and she’s at peace with death.

I am under more stress right now than I have ever been in my life.  I have to consistently take a higher dose of dexamethasone than normal, just to be able to minimally function.  My endocrinologist says I’m doing the exact right thing.  But taking the extra dexamethasone doesn’t magically make the stress or its effects and dangers disappear, it just makes you safer.

I reserve the right to delete whatever posts I want for whatever reasons I want.

I reserve the right not to explain to you why I’m deleting your posts.

I reserve the right not to owe any of you an explanation for anything I do on this blog, or in my life in general.

And if you come here deliberately trying to antagonize me — and you know who you are, because you’ve been doing it for years — I will treat it the same as if you walked up and tried to start a fistfight.  Because right now, more than ever, any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either, especially now that I’m going on Cellcept (an immune-suppressing drug).  And don’t try to tell me these diseases aren’t real, my doctors who in both cases did the labwork personally, will laugh in your face. And to be abundantly clear it’s adrenal insufficiency (i.e. they could not find cortisol in my blood at all), not adrenal fatigue (i.e. a condition used by quacks to blame literally any symptom on, regardless of your actual hormone levels, which then puts you in danger because you’re not getting treatment for whatever the real disease is).

So if you disagree with me, disagree with me.

But if you’re here to antagonize, to bully, to start fights, with a chip on your shoulder, to threaten me, to accuse me of not really being disabled, to deliberately trigger my PTSD, and all the other things that stalkers and trolls like to do for fun?  Fuck off back where you came from and never bother me again.  And understand that if I actually enter an adrenal crisis because of stress you caused, then you are partially responsible for what happened.  I guarantee you the adrenal insufficiency is 100% the real deal, no matter what you think.  And people who know me will view you as responsible.  If you have enough of a conscience to care about things like that, then think about it before you pick fights with me for fun.  I have enough going on right now without that.  Have some basic human decency for once.


14 responses »

  1. I enjoy your blog because your words are thoughtful and magnificent. I appreciate you sharing your life with the rest of us. I hope that you are able to find some peace in this incredibly difficult time.

  2. gentle thoughts for you and your family. Take care of yourself; i feel privileged to read your posts and learn from your life experiences. You have made remarkable influences on my life choices. Block the haters and feel our love around you. peace ~ resa

    • It could be, but nobody’s ever found out exactly what it is. I do have pituitary gland problems, which can affect hormones all over the body (including causing the severe adrenal insufficiency I have). Why are people so interested in why I have facial hair?

  3. Oh, wow. I just came across your blog because someone posted your “In My Language” video. I’m just saddened and appalled that you would have to post this. I’m so sorry that you would have to endure any abuse or bullying. Best of luck to you in recovering your sense of peace and wellbeing. Angela Bennett-San Francisco

    • Yeah there’s some people (such as old bullies from school, posing as old friends) who have personal reasons for disliking me, and other people who seem to believe that if my life story isn’t what they imagined when they first heard about me, then I must be “hiding things” (even though, curiously, the things I’m supposedly hiding are things I talk about constantly). Then they feel justified in any level of bullying they see fit, up to and including death threats. The person who provoked this post was just one of those garden variety “Why don’t you tell anyone that you used to speak and have been to college?” types (the answer, as always, is “I do tell people those things, I talk about them constantly, you’re not paying much attention”) followed by accusing me of faking all my medical conditions, then saying that some of my medical conditions are real (how anyone other than my doctors can make that distinction, I don’t know). It was a string of comments by one guy, and on a good day I’d have laughed it off but it was a bad day and it stressed me out, and then I thought, “I don’t have to take this. Nobody should have to take this, but I have adrenal insufficiency, and deliberately stressing me out is a very direct attack on my health. And given that I’ve posted about it before, this guy probably knows it.” So I wrote that.

  4. Lots of medical conditions (hypothyroidism, adrenal insufficiency, partial deafness, for example) are not easily discerned by the Educated (as in a fair number of M. D.s don’t catch on quickly). Hence, it’s usually best to assume so-and-so is telling the truth if they speak of such matters unless they have a well-documented history of lying.

    Secondly, she’s nothing but right about stress -of all forms – and adrenal insufficiency not mixing. Even *mild* adrenal insufficiency can cause problems if you have major surgery. I was drenching the sheets with sweat after my last one.

    I currently take hydrocortisone every day. What she’s taking is a *much* stronger drug.

  5. Can you please contact me, I was recently diagnosed with secondary adrenal insufficiency due to a asymetrical pituitary gland with an empty cella. Im new to all this but after reading your post I would like to email you and ask some questions

    • Depends on the usage of Addison’s Disease. Some people use that to mean only primary adrenal insufficiency (arising from the adrenal glands directly and only from the adrenal glands). Some people use it to mean all adrenal insufficiency, including primary (adrenal glands), secondary (pituitary gland), and tertiary (hypothalamus).

      So to some people I would have “secondary Addison’s disease”, to other people I would have “secondary adrenal insufficiency”.

      One thing I do not have is “adrenal fatigue”, which makes me angry — furious, even — to even think about. Because basically, quacks invented it so that they could diagnose anyone with a fatigue-causing condition with an adrenal problem. This means people are not getting the treatment they need (including some with real adrenal insufficiency, which can kill when not treated properly — I was near that point when they finally tested my blood for cortisol and couldn’t find enough of that, or ACTH, to measure), and may also be getting treatments they don’t need. People diagnosed with adrenal fatigue do tend to have real medical problems, they’re just being grossly misdiagnosed.

      To make matters worse, some of the quacks have started calling adrenal fatigue, adrenal insufficiency, which just muddies the waters even more. Fortunately I have real doctors at a real hospital who diagnosed me using the most standard testing available and sent it to the Mayo Clinic to be sure. But I’ve had people (always laypeople, my medical records speak for themselves if you’re a doctor) doubt my diagnosis because they didn’t know the difference between adrenal fatigue and adrenal insufficiency.

      The difference in my book? With adrenal fatigue, you don’t have to carry around needles and vials of hydrocortisone to use in case of adrenal crisis. I do have to carry those things around. Sort of like people with falsely-diagnosed “severe food allergies” never seem to need an epi-pen (even if they do have a condition that’s being misdiagnosed as food allergies, which is quite common — been there done that)…

      • Ran across this today as I was searching web. I too have adrenal insufficiency…NOT adrenal fatigue. Like you, my adrenals just stopped making cortisol. They label me idiopathic AI as they can not figure out what happened to cause this. Loved your blog! So true! And I hate quack dr’s and adrenal fatigue too. It really causes issues for those of us who are really sick. If I hear oneore time how Dr X can fix me with his vitamin pack I just may lose it!! I need steroids to stay alive!!

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