Finding the Good in “Evil P”


“Evil P,” the dreaded corticosteroid, “Prednisone,” would seem to be just another white pill, encircled by an invisible russian roulette of side effects.  I’ve “won” almost every side effect on the list:  increased energy/restlessness, increased/constant appetite, thinning skin, fat redistribution to face and torso area, hair growth (peach fuzz), swollen legs, mood swings/steroidal psychosis, insomnia, night sweats, fungal infections, muscle weakness, easy bruising/slow healing of wounds, irregular/fast heartbeat, increased urination.  I can count the remaining side effects on one hand.  So does all that make this small, unassuming pill “evil?”  Perhaps it earned it’s evil nickname because of the overabundance of “luck” that comes along with it, that the unfortunate souls who must consume it usually come out with all or most of the side effects it has to offer.  I realize, of course, that I am on a very high dose and so I naturally have more “luck” than those who are on lower doses.  I am presently holding steady at 40 mg a day (from 60 mg).  I have my chemo follow-up appointment with Dr. H on Thursday, so let’s hope my blood work provides incentive to lower it once again.  

I am up to my neck in my own “Lupie Lamentations;” that quick sand of complaints and tears and self-pity.  I’m sick of it.  I am sure everyone else is sick of it too.  They say that if and when you find yourself in the unforgiving mess of a pit of quick sand, you must stay still.  If you stay still, than you’ll stop sinking.  Ok, then.  So, while I am “taking pause” during this, my “Lupian Epic Adventure Story” (roll in haunted forest set and cue creepy animal noises), I thought it would be the best time to focus on the other side of Evil P.  

I took a stroll with my parents in “Assiniboine Forest,” a criss-cross of walking paths set amidst quivering aspens and oaks, tall prairie grasses and recovered wetlands.  Leaves were everywhere and they crunched, crunched, crunched beneath my feet, the sun was beating down on my orange toque, the sky was open, true prairie sky blue, not a cloud in sight.  It was there that I stumbled upon the good side of Evil P.  Every breath I took that day went deep down into the very depths of my lungs.  It didn’t stop 1/4 of the way with a painful jolt, the pain didn’t travel along the nerves of my shoulders up to my neck or accumulate in my right breast until it felt as heavy as a rock.   It didn’t stop my legs from moving, I didn’t have to lean against a tree for a much needed break from huff puffing, chest heaving pain.  Although my knees did hurt a bit, my legs moved consistently and without pause.  Every night I crawl into bed and lie down on my back without so much as a thought, no pain, no struggle, no pillows to prop me up.  I am not woken up by a stabbing pain in my chest or by a gasp of air as my body realizes it does not have enough oxygen.  My chest and my sides up to my armpits are tender to the touch, but that is all.  With the exception of my knees, my joints are not swollen.  The problems associated with my brain inflammation still persist, I am very tired all the time these days (my endurance does not usually last beyond a few hours) and I just found out that the blood clots I found in my veins aren’t blood clots but inflammation of the veins themselves (which can lead to blood clots anyway), BUT I have not been this pain-free in a very, very, very long time.  Three years at the very least.  That is good.  That is very good.

So, there it is:  The Good Side of Evil P.  I know there will be a time when I will miss Evil P, in the same surprising way that I miss my extreme, manic episodes.  I expect the pain to come back, of course.  Next week we will find out if three rounds of chemo was enough to put the reins on my overzealous, destructive immune system.  If so, then the docs will continue to wean me off of the prednisone.  After that, it is quite a mystery to me.  How long will the chemo last if it is deemed effective?  They’ll probably want to keep me on a low dose of prednisone, although I would like to get off of it completely.  As I have mentioned before, I have no other options because I am allergic to all anti-inflammatories.  The docs might get me into an allergy clinic to decrease my insensitivity to those drugs.  I’m not sure what that involves, but I am sure it includes a lot of poking and trial and error.  I’m not too enthusiastic about that, but I will put my super-hero pants on and do it if I must.  

I dream of being drug-free one day.  That statement most definitely beats any and all of the grandiose, psychosis-induced life plans I have been spouting these last few months.  It’s the ultimate impossible dream.  One of my keepers sent me this quote from “Alice in Wonderland”:  “There is no use trying,” said Alice; “one can’t believe impossible things.”  “I dare say you haven’t had much practice,” said the Queen.  “When I was your age, I always did it for half an hour a day.  Why, sometimes I’d believe as many as six impossible things before breakfast.”  I dare say she has a point…

Speaking of “listing rituals,” I started my “Three Good Things” journal two nights ago. So far, I would recommend the practice.  It is a nice past-time as I remain here, suspended in my pit of quick sand.  I will also continue to test myself with attending workshops and events like my neuroscience sessions, observing myself to find out where I am at cognitively, to see where my limits are in social situations, slowly gaining my trust in myself again.  In other adventure stories like “The Princess Bride,” a hero ties a rope around the tree, attaches it to his waist and jumps in, ultimately surfacing with a mouthful of sand and the girl in his arms.  Not sure if such a character exists in my story, but it is clear that in this chapter I have to wait, that I must be still.  I know that my story doesn’t end in a pit of quick sand in the middle of the Forbidden Forest, so I am okay with that.  A little stillness would do me some good.  I have been feeling very tense, uptight… unsettled.  I need to chill out.  I need to find the good in my “now.”  I want to be 5 chapters ahead of where I am.  It doesn’t work that way, Elena.  One chapter at a time…

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