Sep 5, 2018
seen from Mexico
seen from Estonia
seen from Brazil
seen from China
seen from Philippines
seen from Malaysia
seen from Italy
seen from Malaysia
seen from United States
seen from Malaysia
seen from United States
seen from Canada
seen from Malaysia
seen from Brazil
seen from Netherlands
seen from Italy
seen from Philippines
seen from Türkiye
seen from United States
seen from Malaysia
Hand me the icepack and back away slowly
Urggghhh It's not even really summer yet and I'm stuck in my apartment, draped in an ice cold soggy towel, trying to bury my face in popsicles. I mean popsicles that are still in their wrapping, otherwise would be too sticky. And a bit creepy. A bag of frozen peas would be more useful but I don't have any ...on account of my freezer box being completely full of popsicles. Ah, the combined joys of hypocortisolism and body temperature dysregulation. °______○
This is not the circadian rhythm you are looking for
My doctor's latest idea was to have me try a much larger dose of hydrocortison in the mornings and afternoons, on that good old let's-see-what-happens basis. The different melatonin pills didn't really help me find a sleep rhythm so I guess my doc thinks we should try poking other bits of the pituitary axis instead.
Theoretically more cortison should have made me feel better and more alert at least in the short term, but it only made me MORE tired. I've been sleeping the clock around (except for that few hours of unavoidable 5 AM wakefulness, which is really the only pattern the melatonin has established).
...point is, if I'm not around much right now, it's because BRAINS. They have forgotten how to brain. :(
ACTH Rapid Stimulation Test
CORTISOL PROBLEMS
Cortisol Actions
Permissive action over glucagon (promotes liver glycogenolysis) and over cathecolamines (epinephrine)
Cortisol mantains BP (epinephrine - alpha 1 receptor )
Gluconeogenesis (from aa)
Protelysis
Lipolysis
Decreases bone formation
Decreases immune system actions
Anti-inflammatory effects
My woes, they are boring and complicated and therefore I simply MUST share them
Whatever illness you have, acute or chronic, doctors are only human and often too busy to help you as much as they should. Also some are just plain ignorant or lazy, but I'm training myself to stop generalizing that thought.
Thing is, when you have a rare chronic illness, you're pretty much on your own. Unless you get super lucky and land yourself a very keen and helpful specialist - most people don't.
Like, Addison's disease is pretty rare. Idiopathic secondary hypocortisolism is even rarer and even the specialists can't seem to agree how much it really differs from Addison's disease and how that should affect the treatment.
There are Addisonian patients who have inadequate treatment and every now and then someone DIES because it's so hard to keep everyone informed. And how are you even supposed to educate medical staff about your essential treatment if you're slipping into a coma?
This post brought to you by the fact that I realized I still haven't found anyone to prescribe injectable cortison for me. The tiny Finnish Addison's support group agrees that everyone, including people with secondary hypocortisolism, should carry the injectable medication in case of emergency. Some of them have been lucky to get this advice from their doctors right after diagnosis. But many are stuck like me, or worse.
I have a medical alert bracelet but I often wonder if it'll be any use. A first response team might miss it, or not know what it means, and even if they do spot it? Well. The last time I had to ask for an injection at the ER of one of the biggest hospitals in the country, they didn't have any of the medication at hand. They sent out for some but it was about 16 hours before I got it. Someone with primary Addison's could have gone into a full crisis really fast and that response time would have been way too slow.
It's been, what, six years since my diagnosis? I fought for that diagnosis for a decade, and sadly it's still been a fight every step of the way. It's hard enough to find a doctor who knows more than maybe the name of your illness, or is willing to learn about it. And when you do find someone, they're more than likely to disagree with everything your previous doctor said.
In conclusion, even in a first world country it's a big privilege to go about your daily business without having to fear for your life because the minimum medical safety net you require is simply not available to you. Protip: injectable cortison is not expensive or dangerous. So shut up and take my money omfffffffffg
Huh
I've heard of Modafinil being a miracle cure for some, and having little or no effect for others. But apparently it's also possible for narcolepsy medication to make all the fatigue/weakness/hypersomnia symptoms WORSE.
I tried to soldier on but after a week of taking 50 mg per day (100 mg being the usual starting dose) I was so ill that my doctor told me to stop taking the meds.
My theory is that my body is already under too much strain from other meds / illnesses, and that the Modafinil possibly leeched the last of my cortisol reserves (I have idiopathic hypopituitarism).
IDK, just throwing this out there in case anyone has had anything similar happen to them. Or if they've found an alternative that worked for them. Feel free to message me if you don't want to talk in public; anon asks are also enabled.
I'm feeling so defeated right now, feels like I've tried everything and anything over the years and this was my last hope for becoming a functioning human being again. :(