Tuesday, March 29, 2016

Rebel Without An Ounce of Energy

I've decided to do what I do best: completely ignore my doctor's advice and do things my own way. 

(I'm not saying you should too...please do not take this as advice!)

If you've been reading along here, you know I've been trying to cut my dose of Prednisone down. Way, way down; from 25mgs/day to a goal of 5mgs/day. I've been stuck at 7.5mgs for a few months now and while I  have been able to lose some weight and see a reduction of the other side effects from taking steroids, my inner compass has been telling me to get down to 5mgs. For some reason, aka hours of research online, I am convinced the side effects will really start to reduce at this dosage. 

The problem is that my body got used to such high doses of steroids for so long, so every single time I have tried to cut back to 5mgs/day, something has gone wrong and I've teetered on the edge of an adrenal crisis a few times. I haven't had a crisis in over a year and try to be very careful to not have another. But that hasn't stopped me from wanting to reduce that steroid dose. 

My endo recently told me she did not think my body could handle just 5mgs/day. BUT this was before an underlying infection was diagnosed, so the reason my body couldn't tolerate 5mgs was very likely the fact that I was ill and therefore actually needed more steroids, not less. 

So I've decided, on my own and against medical advice, to try to cut back one more time. Call it a "hail Mary". If this time doesn't work, I will let this idea go. 

I hope.

I made sure that I am healthy, have a low-key schedule, and can rest a lot, as my body tries to adjust to this lower dose. Last night, I slept from 9pm to 7am, only waking up twice and restless 28 times (that's good for me, I often get closer to 50 wake-ups/restless per night) and I have still been exhausted all day. I'm basically just trying to get through each hour at a time, knowing that I can go back to bed soon-ish. 

I am hopeful that in a couple days my energy levels will pick-up and my body will adjust to this lowered dosage. If not, I'll just have to go back to the higher dose. 


So keep your fingers crossed for me, fellow shit creek survivors. 


an Addison alien

who is determined to make this time stick

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