Hello again dear Juan Day Readers,
So I was sitting by the fire yesterday, poking it here, nudging it there in my usual Indian Chief fashion that never fails to sooth the soul and I was just letting the thoughts float by, no matter what they were and one of them took me back to the day in hospital when I received the news of what my diagnosis *may* be.
This was during my first few days in Nephrology, and just to shed light, the hospital is also a school, filled with interns and externs and a rather hussle and bussle place at times.
My room mate then was still the effectively deaf older woman who' s name I never got, (Frenchies are weird about introducing themselves, even in such close-quarters without curtains, apparently, so I will call her Whatina), and she was in her bed at the time reading Vogue when the diagnosis news arrived.
So there I sat, it was just past breakfast time, the best hospital meal o' the day, (save for the grey coffee), on my wee bed in my jammies and in fairly good spirits as by that point I had already had a couple days of I/V corticosteroids in me and was at last feeling no pain.
In walked my doc, to my delight as not only as I've mentioned, does he speak wicked English, he's also very smart, listens well and actually answers with an "I don't know", if he actually doesn't know--a rare trait in any human these days.
But it was not only he who entered the room, nay--in his wake were perhaps 8 other young and bright-eyed interns, all sponging up all they could while he made his daily rounds on the 14th floor.
So 'round my bed they gathered, with the good doctor at the foot, me sitting with my knees pulled up, sipping the dregs of the last of the coffee facsimile while he proceeded to let the possible cat outta the bag.
As he spoke, saying the name of the disease, which at first fell on my ears like some kinda space language, he went on to further detail what it really is, how it works, what it had done to my little kidney beans, then thankfully shedding more light on how this rare and serious autoimmune disease hadn't chosen to attack to my: brain, lungs, heart, teeth, sinuses or skin, (much). It had obviously over the years taken a huge toll on many of my joints but all in all, the fact that my kidneys were still at 35% efficiency, was all very good news in terms of NOT needing dialysis.
As all this information slowly filtered into my wobbling brain, tears of shock and disbelief and fear naturally welled up in my eyes while I tried to process it all and with him reminding me the whole time that they were still not 100% sure that this was actually the disease I had--but probably.
Tears in many of the interns eyes welled up too and lemme tell ya's, it was a very strange and deeply sad scene to be a part of as I saw my expression echo'd in the eyes of so many others in the room. It was very hard to keep it together.
I remember quickly switching gears, trying to desparately control my emotional state as questions jumped up outta nowhere like, "Will I be able to have champagne?!??!" Seriously, that was one of the first Q's that I had. And people say I'm not Frenchified.
Then came the realization that I'd be on blood pressure meds for life, leading me to wonder if exercise, (of the hardcore, military nature that I have a bit of a penchant for), was to be avoided because of those meds?
Then Q's about the treatment itself which he was explaining little by little, rolling out words like chemotherapy, prednisone, heavy antibiotics and vaccines and YEARS of it to boot. Well, you can imagine the room was quickly getting heavier and heavier and wow, I SO would have preferred him to have laid that shit on me one on one.
But alas, as mentioned, this hospital is also a school and with that, the protocols of learning and teaching go with and wowzers--I'm sure that whole team learned a whole lot that morning. I know I sure did.
And then they left.
And there I was.
BLOWN outta my waters trying to make sense of all I'd just heard that again, might not in fact be the case.
At that point, their waffling that the cause *might* be Lupus had not been yet laid on me, thank all the stars above because on THAT day, my freak-out shit really hit the fan and if it weren't for my precious iphone and G3 connection, I would have never eventually ruled out Lupus after finding a very good site that listed the 11 classic markers of the disease of which I was only sporting perhaps 2-3.
But I tell ya's, when that one intern thought it wise to share with me a few days later that it *may be* Lupus and after it was confirmed that in fact no, the official diagnosis was as originally thought, Microscopic Polyangiitis, I told him in no uncertain terms that if he EVER--EVER finds himself in the same diagnostic position between one horrendous disease and another even scarier one, (as I learned that Lupus can often cause major brain damage), TO KEEP IT TO HIMSELF until all is confirmed.
I told him that he took my already half broken heart and just crushed it and to please, think 10 times before speaking in this way to a patient facing so much in so little time. The fact that he delivered his little speech with the creepiest of corner-mouthed grins was downright disturbing and made it all the more surreal and impossible to for me handle.
Pleased to share that after a day of processing my little speech, he returned to my bedside with a tenderness that he had not shown before, actually touching my leg or arm when he talked, smiling even and making a serious effort to improve his bedside manner. He quite simply, rised up and made my week in doing so.
Yyyyyup, that was part of how my fireside day went on Sunday. It was a day of much rewinding and affirming and all in all, beauty as I really looked around me at the bounty of truth and goodness that has come to hold me tightly ever since this sickness came into my life.
It's gonna sound weird to some, but honestly, it's like I arranged this disease somehow by my own doing, because for many years, my life here in France was not--wonderful. Truth be told, I was often very lonely and disconnected feeling and no doubt that has much to do with simple time zone issues, making just a phone call often not possible due to the fact it would wake the callee up and who the hell wants to disturb a loved one's sleep just to hear their voice? I've written a good song about just that.
It also no doubt had LOADS to do with my being sick for a very long time and just not knowing it. The doc said that that the kidney biopsy showed not only acute damage, (meaning recent and harsh), but some much older lesions showing that the MPA had likely been ebbing and flowing and taking me out in increments over many years. And that damage is unfortunately, irreversible.
Now that I am a patient, constantly and literally being cared for by so many different people, be them hospital employees, lab workers, or even cab drivers who hear my story and go out of their ways to open the doors for me or help me carry stuff etc, or my dear husband running downstairs to get my little heating pad, (I'm often cold), when I forget it downstairs before bed, I am reminded so often of the grandness of the human spirit and all it is capable of--when it is awake.
When I look around me at all the beautiful friends old and new who have come seemingly out of nowhere to show me love and support and more importantly empathy and understanding, I am humbled and touched and inspired to go on, do more and be better than I have ever been in every way, from the art or music I create, to keeping it ALL REAL, to even the simplest chores of say, cleaning my little kitchen in a way that makes me proud to be messing it up again.
So voila, there is today's Monday blog and I hope it serves to fuel you guys up in one way or another.
take care, be well and +++vibes to you all,