Merry Ho-ho and a happy new year 🙂
I’m encouraged so far this year.
This year has come with 2 new diagnosis’, and hopefully will be my last.
Good news, bad news, good news, bad news.
After a bunch of tests and feeling like garbage left out in the sun too long, my internist has discovered I had adrenal insufficiency (Thanks, Prednisone! *insert eyeroll) and POTS syndrome.
Hopefully, after treatment starts for the AI, the POTS will be easier to control.
The good news in all this, is that for once treatment (for AI) is fairly straight forward and easily managed. Don’t get me wrong, it’ll be a process and involve a lot of learning through trial and error, but in comparison to the last year this is very exciting…. the treatment for POTS is far more complicated. I am really, really, REALLY hoping once the AI is under control, my body can more easily compensate for lateral changes, thus handling the POTS better. I should probably elaborate on what each are.
Adrenal Insufficiency / Addison’s Disease
Thanks to the long amount of time spent on large amounts of prednisone, my adrenal glands have shrunk and stopped producing cortisol and other such essential hormones. AI causes fun things like (but not limited too); extreme fatigue, constant nausea, vomiting, no internal temperature control, severe insomnia, weight loss, anemia, hypoglycemia, low libido, and inability to regulate sodium levels and emotions. So it feels like I am back on 100mg of prednisone, without actually being on prednisone…. irony being that treatment is going to be a maintenance dose of prednisone, plus 2 other potential steroids.
So that’s not overly positive. However, the positive side is that my internist did catch it, and once the endocrine center 1.5 hours away has time to fit me into their busy schedules for more testing, I will be able to find out how much and of what specific steroids I’ll be on for the rest of my life.
As much as something with the acronym of POTS may *sound* like a lot of fun, in actuality it stands for Postural Orthostatic Tachycardia Syndrome, which is a form of dysautonomia. In regular speak, my head isn’t telling my vascular and cardiac system to keep up with any kind of level or lateral changes. You know that feeling when you get up too fast, and you get the ‘head rush’ / everything goes black / and you may or may not fall back down? It’s like that, but to the extreme… and lately it’s been all the time. This is also the reason that each time I wake up, I feel like I am having a moderate to severe heart attack. Unfortunately there isn’t much known about POTS (as it’s a relatively ‘young’ disease), and management can be very challenging. Massive ‘salt loading’ is a huge benefit in both POTS and AI, so oodles of salt and oodles of fluids are a daily event.
Writing is coming difficult to me today… I haven’t slept in 48 hours, my brain is fragmented, I am exhausted, and just feel…… ‘blah’. I apologize. It’s not very entertaining to even mildly interesting to read this, and I definitely feel like this sounds very ‘forced’.
To be fair, it is forced – but no way to get ‘back in the habit’ without starting up again to build a habit.
The emotional instability is really hard… I feel very deflated, despite my mind logically knowing I should at least be elated.
I’m crossing my fingers that the endocrine center will get me in soon – my internist was thinking 1.5-3 months was a reasonable time frame as I’m a high priority.
Thank you, AHS *angry face*
Anyhow. If you’ve gotten this far – thanks for reading. I’m just beginning to learn about POTS, so if anyone stumbles on this and has some great resources, please feel free to shoot me a message.
Same Bat time, same Bat channel……