Thursday, January 28, 2016

It DID Take It's Time!

Yes dear Friends, Fam, Kindred Souls & Warriors too,

Even though I'm boob-deep in the final, (fine hell), prednisone wean, complete with the usual body-pain, weakness and deeper fatigue, daily headaches, irritability and blaaaaablablaaaaaa, (BUT WAY LESS THAN LAST WEAN and woot!), amidst it ALL, I have made----------a brand new music video!

First time in YEARS.

It's taken me quite a few mornings, as those are still when I'm all there, but some mornings have gone into afternoons some of those into an evening or two, (not that any good came of it, whoa... ; ),  and I'm just--pretty speechless actually.

And smiling very widely--or grimacing, depending on the hour.

I wrote this song back in '02 after moving to Paris, one of the first love songs I wrote in P's and my honor and it's called, "We Take Our Time".

A couple of years later, P and I did a remake.

A few years after that, Bob, pianist, composer and other half of our duo Dragon & Rosebud, heard the remake and wanted the vocal track so he could do his own instrumental for it.

Him and his funky left hand.

I recently heard the song again and thought, this thing needs harmonies--and a video.  So I threw in about 20 vocal tracks and made a video.

It's a rough 'n tumble sonic rumble, but a groovin' and frozen in time thing.

Shout-out to all the peeps, whose wares were spice in the video stew.

All this, coupled with the multiple paintings and other songs I've been writing and working on lately and I dare say, I DARRRRRE----------I AM FINALLY GETTING BETTER!

I didn't say it until now because frankly, it would have been lying.

That said, just four months ago I wouldn't have dreamed of being capable of so much again.

So, since this snappy little number and video are basically, a celebration of some precious chi regained, I share it here as well--if only to highlight how incredibly important the long game is for anyone else out there feeling stuck in the poorly lit tunnel of chronic illness.

Hope the tune gets some toes a-tappin'.



Saturday, January 9, 2016

Looking Back--a Timeline

Hello again, All,

Since my last blog post, I've been getting a number of questions on the specifics of my treatment over these past three crazed years and so, since it's high time to look back on it all from this particular peak, here is a timeline.

*Warning, contains a smattering of medi-shop-talk, numbers-wise.*

January, 2013:

-Hospitalized for acute renal failure, kidneys at ~20%.
-Diagnosed with Microscopic Polyangiitis, significant previous kidney damage and hypertension.
-Released after a couple weeks on a boatload of daily meds, including 60 mgs of prednisone/day and chemo infusions every three weeks and full-time antibotics.

June, 2013:

- Reached medical remission after 8 rounds of chemo.
- GFR, (kidney's filtration rate), hovering around 38.
- Over a few months, tapered to 10 mgs prednisone/day.
- Began maintenance phase consisting of 5, 500mL infusions of Rituximab over the next 18 months.

February, 2014:

- Diagnosed with chemo-induced early menopause.
- GFR, still at 38-ish.
- Reached 5 mgs of prednisone--excruciatingly reducing by only 1 mg per taper since reaching 10mgs.
- Still in medical remission with negative MP0/PR3 levels, but with positive ANCA titers, (usually around 20, so not too high over the line.)

August, 2014:

-Down to 4 mgs prednisone/day
- GFR holding.
-Remission maintained, though with some disease activity following the flu in March.  Titer increased to 1:100.  I had one month+ of extreme weakness, (couldn't walk for more than a few meters without being winded, with intense leg pain plus many extra pain(s)), following the flu fight.. 

November, 2014:

- At 3 mgs prednisone/day.
- GFR still around 38.
- Down to half of the amount of meds prescribed upon hospital release.
- Medical remission maintained.

January, 2015:

- Slowly and painfully reached the coveted 2.5 mgs of prednisone!  I stayed at that dose for one year, unable to face any more massive and lengthy withdrawal hell that included some formidable depression.

- Medical remission maintained, but with more disease activity following a vacation during which I got pretty sick with fever, diarrhea, fainting and extreme weakness.  Four weeks to bounce back from that.  Titer up to 1:100.  MP0 & PR3's still thankfully negative.

Skip ahead to today:

- Remission holding at 12 months post-final-Rituximab infusion and with the same MP0/PR3 levels as after the very first dose too. 

- GFR still between 38-41.

- Two, two-month+ bouts of (and I thought I knew me some pain, WOW), renal colic over last year or so. 

- EDIT: Because I'm STILL not used to this being a reality and also because I was just painfully reminded of how bad it gets,  this past year also produced an official diagnosis of "Raynaud's" after the symptoms ramping up up considerably since '14.   Raynaud's a vessel-related syndrome which causes the extremities, (including my poor shnoz), to become much colder than they should be for the environment.  Achy, fumbling icicle fingers that require either gloves or some other kind of therapy or it escalates.

I usually nose/hand & foot-freeze until about 5pm each day and then weirdly, usually rather suddenly, too, the hand veins pop and I'm as warm everywhere as anyone else.  

I spend a lot of time with my paws in hot water bowls, above boiling pots and running toasters, or using the hair dryer on me, my shoes, my socks...  It's quite a disruption to daily life as I know it, I must confess.  Glad to have usually an hour's break following lunch, even better/warmer with a glass o' bubbly.

I am now into week two of the FINAL #!%*'n prednisone taper!  This last one will take me to zero, over a six week period and so far, so--ok.

For myself and many other people, prednisone tapering after years of use is just plain punishing.

Each reduction for me at least, guarantees a month+ of deep and gritty joint pain,  sometimes near offline muscle weakness, even more fatigue than usual, stomach problems and weight loss, more migraines, a variety of random stabbing-scream-out-loud pains and for these last few mgs, some grade A, molases-like gripping depression.

I'm collecting crossed fingers and toes to add to mine for this last trip down the prednisone hole, please and thank vous.

It's really something to see it all like this, bird's-eye-view-like.

For those wondering how I'm actually feeling these days/daze, it's still, for now at least, only about a 6 hour day for me.  I can usually pass myself off as pretty normal up until around noon or 1pm, but after that, fatigue and still, notable thoracic pain sets in, requiring me to either lie down on a heating pad for basically the rest of the day, or to take tramadol+paracetamol--which I only do 2-3 days a week for various reasons, urine-production interference and an opiate allergy being but two. 

How many thousands of milligrams of dreadnisone have gone into this lil body over these past three years?

High-fives to every blessed vegetable, fruit and nut that helped me get through it all relatively unscathed.  I thankfully never had to deal with many of the dangerous side effects often associated with long-term/high-dose prednisone use, like: diabetes or serious heart issues.

Yay for healthy eating then, now and always.

I'm SO looking forward to functional adrenal glands once more.

May I never again need to write a timeline like this and moreso, may a cure for this rare and lethal disease become a reality soon, as like with so many other serious autoimmune conditions, the toxic treatments while life-saving, are often downright dangerous and can cause a whole new set of health challenges.

I close this long one with cheers again to every reader of Juan Day at a Time out there, (which is nearing 37,000 hits thanks to you all).  This blog has helped me plenty and I'm glad that that, has helped others who need it too.



Friday, January 8, 2016

The Final Countdown

G'Day, All,

Since a lot of goodness has been happening since I last posted, I will share now in point-form:
- I started my final prednisone wean on January 3!

- The hell that is (WAS!), renal colic resolved completely within 3 days of stopping the calcium/D3 supplementation.

- I've been back at the (graphic this time), drawing board and it feels so good.  This latest one is based on a still from a  nature film.  I call it, "The Snow Leopard's Moon" and I quite like the feeling I get looking into that starry sky.
- I have reunited officially, deliciously, harmoniously, with The Dragon aka pianist/composer, Bob Boisadan, (who with myself makes for the other half of "Dragon & Rosebud"), and we're already working on new music together again after a helluva hiatis.

-My new nephrologist and I get along just swimmingly.  She is smart, pleasant and sporting some formidable English chops too.  It was she who suggested I ditch the calcium and the highest of fives again to her for giving me back some much-missed chi due to the kidney stone hell that went on for more than two months and whoa Nellies.

Regarding this final wean down from dreadnisone, after getting the doc-ok, (and anyone else out there wanting to try this, talk with your docs first too, please), I'm going from 2.5 mgs directly to zero, but this time, using a system I've never tried.

I came across it last year and it's touted to be kinder to the host than the usual method.  It takes 6 weeks per wean and goes like this:

WEEK 1: Sunday, take the new dose and then the old dose for the remainder of the week.
WEEK 2: Sunday and Monday take the new dose, then return to the previous dose for the rest of the week.
WEEK 3: Sunday, Monday, Tuesday, new dose and so on like this until one reaches new dose levels for the whole week.

I have only done week one so far and wow, even one day was a deeply painful reminder of how heavy and hard withdrawal from prednisone is.  Wonderful how we do that blocking out biz...

There will be much digging-deep to get through this last hateful/joyful tapering process and this time, I will not hesitate to take whatever painkilling/chillout meds needed to get through it in all possible style.

No matter how low the chi or mojo reserves get, dig deep I will and when it's done, I will at lonnnnng last, be taking only ONE MEDICATION PER DAY!  (The BP meds, which due to the kidneys, are for life.)

"ONE, TINY LEEEETLE MED, A-AH-AH-AHHHHHhhhhhhh!  (a la "The Count".)

And on that sweet, muppety note, I will now head out into this crisp blue day to walk Poochini here.

+++vibes and extra ones to anyone out there in the prednisone tapering process right now--may the force be with us,