After years on ridiculously high doses of dexamethasone, I switched doctors and medications. I had to start with the equivalent dose of dexa, which was a whopping 25mgs of prednisone.
25 mgs! The "average" Addisonian takes 5 mgs per day.
So we started climbing down that steroid mountain, cutting back by 2.5 mgs each week, with the goal of getting down to 5mgs.
Why 5?
From all the research I have done and anecdotal stories shared with me, 5 mgs seems to be the amount that produces the least side effects.
Side effects like weight gain, especially around the face, on the back of the neck, and in the belly (to the point I get asked if I am preggers on the reg). Or emotional ups and downs that leave me in tears for absolutely no reason, like my eyes are just leaking. Or being more likely to develop osteoporosis and diabetes. Or super awesome rashes that cover my neck and chest and will probably start covering my face soon too.
Because it does not look like I will be getting off this mountain EVER.
Cue the water works.
I have tried several times to take lower than 7.5mgs per day. Each time has put me on the verge of an Addisonian crisis. I have been feeling extremely fatigued and seeing yesterday was a cold and blustery day, I made it a sick day and stayed in bed all day. I thought if there was any day I could take a lower steroid dose, it was yesterday. No stress, nothing to do, no exercise...
And guess what? I woke up today with a rash from the top of my neck to below my breasts. I sent a photo to my doctor (no, not of my boobs, get your mind out of the gutter) and her response basically broke my heart:
"I'm so sorry, but your body will not tolerate a lower dose"
I full on burst into tears (at least I can partially blame the low cortisol) and started putting up the decorations for an epic pity party. I mean, it's just not fair! I know life isn't fair, but if Stupid Dr hadn't put me on dexamethasone and made my body get used to such a high dose, maybe I could handle just 5mgs a day. I spent so long being sick and not knowing why, so to now have a diagnosis and still be sick all the time because of the medications that are keeping me alive are also making me ill: it is so frustrating! I feel like a dog chasing its tail, except dogs seem to enjoying doing that and I'd rather get a full body wax.
As I was fuming and fussing that I will be stuck at 7.5mgs for at least the foreseeable future, if not forever, life decided to whack me upside the head. A friend of mine stopped by, who is like a mother to me, and was comforting me. I said I just didn't want to be fat and feel like this for the rest of my life. She told me that she knows what it is like to look in the mirror and not like what you see - but that is really the least important thing in life.
You see, my friend was badly burned on much of her body, including her beautiful face. I am so used to her scars, I barely even see them anymore and obviously I forget that they are even there...so much so that I whined about "moonface" to a woman whose entire face is scarred.
Ooops.
But being the kind soul that she is, she simply hugged me and reminded me that feeling well is much more important than looking well. Better to take the steroid and side effects than to be in the hospital all the time and eventually die. Because no matter how little I want them to be, those are my only options.
So screw the pity party. Instead, I'll set up camp here, where I can see the bottom of my Mount Everest, even though I can't reach it. And I will hope, and hope, and hope some more that someday, somehow I'll be able to lower my steroid dose and recognize my own face in the mirror.
More than that, I hope to learn from my friend and her scars to handle these physical changes with a whole lot more grace and gratitude.
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