Dr. House, to the Inconclusive Room, Please

Hey, All,

So, it's been a while and that while, has been a whirl.

Since I last wrote, there have been not one, but 2 MRI's and another meeting with the prescribing bone specialist of those, the 14 x-rays and the array of blood tests.

I'll start positive, with the MPA-related GEM, as I have not seen this reading since June '13.

The reading?  A NEGATIVE ANCA titer!   (These are the blood tests used to monitor MPA activity.)

This is a beautiful thing and I'm still rather floored by it.

That typed, and to quote the Professor, "one can still have Vasculitis symptoms with a negative blood titer."

This new, lovely low, coupled with the stability of the kidneys, is a real good thing, MPA-wise.

Hoping hard that ye ole GFR continues to head back towards the 40's again.

Now, onto the many apparently non-MPA-related issues:

As mentioned in my last blog,  all of the recent bloodwork came back wonderfully normal, (aside from the usual, kidney-related never-normal levels, along with still too high uric acid and one other odd reading.)

I was tested right down to the HLA-B27 level, (a protein in the genes found in 80-90% of patients with certain forms of spinal arthritis.)

While all that is indeed quite awesome, the MRI's shed some light on something that until now, I had only known by the burning pain in the mid-spine which, as the day goes by branches out into many other joints, large and small, taking my chi with it and rendering me most days, firmly on the heating pad in bed by 7pm.

Now it's visible.

Basically, inflammation in thoracic and lumbar areas and lumbar disc degeneration was the MRI verdict, ruling out Ankylosing Spondylitis.

So--if I don't have AS, like the bone specialist says, why the daily grind?  And these long and weird-ass weeks when things for some reason amplify into even more intense spine pain, often femur aches, sciatic-like thigh-twangs and pelvic pain and increased aches in many other joints--often with all that, scream-out-loud Crohn's-like problems and strange bouts of extreme weakness, resulting in even more fatigue than usual.

But never any redness nor swelling in said joints.

In those times, the mini-dose of tramadol I can handle barely touches it.

I still wonder if I'm just at an early stage of that condition, (or some yet unamed similar one?)--as I have so many symtoms that line-up with it; the mid-day start to daily spine pain, which is now in to year-three, the cyclic IBD-ish problems, skin issues too.

My last meeting with the specialist ended with a frustrating medi-talk version of basically, I don't know, with him asking me to keep in touch and directing me back to the doc who sent me to him in the first place.

*dead air*

*some swearing followed by sighs*

*later, renewed meditation habits*

So, to sum up, after all the poking, scans and dipsticks, I still don't know the cause of these quality-of-life-threatening pains and problems--which since off prednisone have only increased.

And I must confess, this has all been a bit of a blow to my hope-resovoirs as frankly, I reeeeeally thought that by now, after the regular whining to any docs that listened about the back probs--that I would be finally be looking at some kinda treatment, but naaaay.

I also thought, that after all the chemo, prednisone, Rituximab and now near 6 months off pred, that I'd be feeling somewhat better by now, but nay too.

The bone doc did say that he would be consulting with my Prof again about everything and I will write the Prof soon to see what fruits may have sprouted from that.

For those wondering, due to these kidneys, my pain-managment options are few as the usual treatments, (anti-inflammatories) are off the table and I can only take small doses of opioids/ates due to allergy.

I asked the bone doc about acupunture and he referred me to an apparently tres tenacious specialist who is, very interested in pain.

Well, I've got a nice buffet for her waiting.

Appointment in a couple weeks.

And maybe she'll be able to help with these brain-melting migraines too, which also have been increasing since off pred.  Had one last night in fact and thankfully was up to pee and awake long enough to feel it bearing down hard.  I took a triptan soon enough to get away with only puking a couple hellish times before reaching the safety of sleep again after two+ hours in the melon-vice.

The bone doc and I also talked about gluten and he mentioned how a number of his patients have reported less pain on a gluten-free regime.

Even though I tested negative for Celiac's, I am seriously thinking about doing 3 months gluten-free as these flares usually happen every two months-ish, so if I don't have one while gluten-free, I will likely stay that way at least for another hopefully, telling and less-pained three months.

And I must say, even though we're still in the dark, I'm damned glad to at least not be looking at even more immune-system-smashing toxic treatments.

And so grateful that they found nothing life-threatening.

On another + note: even though this summer has been extra painful,  I still managed to redo another vault-song through it all, which is now ready to mix.

Annnnd, I am just about finished a new acrylic painting too.  I'll be sharing those soon, methinks.

I wonder, what would Dr. House do?

Funny, I joked a bit with the bone doc about that and he said, "The Professor IS Dr. House", and went on about his many paradigm-shifting Vasculitis research and accolades.

All digits crossed for a Housean-moment soon.

Oh and, if there's any medi-mages out there reading this going, "AHA!!!", please do drop me a line.

++++vibes,

J

14 X-rays Later...

Good Morning, All,

I'm up kinda early due to crashing early and hard, thanks to a chill pill, AC and a good dose of radiation yesterday.

14.  Not a number I like, x-ray-wise but at least something is now finally being done about this daily spine pain.

In France, when you have scans done, there is always an attendening physician who will review the results with you and give you a report and mine--isn't the greatest.

Disc degeneration in many areas, in a nut shell.   The word spondilytis, (basically arthritis of the spine, which often wreaks havoc in the internal organs, especially the intestinal area, and other joints as well,) was used too.  As was the term "minigeodes", which are, as I understand it, basically cysts.  Those were in the right hip area if I got that right.

And all this was preceded by my learning of yet  a new low in the kidney filtration rate, now down to 31.  (Last testing was 35.)

At one point over this long treatment course, it got up to 41.

The CRP (measurement of inflammation), is up from its usual level again and the lymphocytes are down.  Neither a good thing.

I will be seeing the new bone rheumy who prescribed these many blood tests and xrays on Sept. 19 and right now I'm just hugging the goodness of the many negatives in those recent results.  No Celiac's, no recent heart attack, thyroid normal, no Lupus, no Diabetes, no Sjrogen's...

Soon, another ANCA test, (the test that measures the MPA activity) and in a couple weeks, an app with the nephrologist as well.

No art or music to share with vous on this post, just this step towards a possible diagnosis for the daily dose of draining pain and with it, soon I hope, some very specific physio to lessen it all.

I will share this here photo, which is another cool treatment done with an ap called "Prisma", I've been quite enjoying it lately.

And coming soon, a new tune!  This one is a redo of another vault song of mine from 2000 which, IMNSHO, turned out pretty alright and is now waiting on Master P for the final mix.

I'm also in the midst of another redo these days, a painting.  Now that I have acrylics again, I'm doing, "Dream Squatting",  once more, to make it finally shine like it did in the dream it came from.

As soon as this French-fried heat wave is over, I'll be able to resume work on that too.

Now, time to feed this hungry hippo here who is most politely and repeatedly directing my attention to the fooooooood room, heheh...

Sweet ole Tony is doing great these days and that's a beautiful thing.

Time for some weekend QT with P to start, which will include a trip to the organic store for treats and non-meat sourced protein in hopes of increasing that GFR.

For the last year I've been eating more fish more often, as well as chicken periodically (when necessary), and while it's likely helped me regain some lost muscle from the prednisone years, perhaps it has something to do with the kidneys waning.

More to discuss with the Neph...

J out, avec +++vibes

Typed too soon...

So yeah, so much for the time off pred and lesser migraines jazz.

Last night at 1am, I was head-smashed and viced into a more typical J-migraine, which is to say, excrutiatingly frightening.

Twice during the pain marathon, P wanted to call an ambulance but I protested, remembering the last time I hit the ER for migraines, which was basically just an added layer of hell to the swelling brain cake.  And while inside a crash-banging MRI too.  After a whole day of tests and waiting, they all  showed nada, as per usual.

I violently dragon-puked 6 horrid times last night/this morning and for hours, was reduced to a panting, palpatating mass thanks in part, to my executive decision yesterday to take a second tramadol when the first ran out.

This is bad because the triptans I take for migraines are contra-indicated with tramadol, (risk of seratonin toxicity), so when the head-hammer came down, I couldn't take the migraine meds and had to ride it out with mere icepacks and tears until morning, when the tram was surely outta my system.

I cannot express the sheer joy of being free of that hell at this moment.  I'm dopey and weak and my words are jumbly, and this has taken me near two hours to write, but, I'm blissful.

Probably because that level of extreme pain, (nevermind the rapid heartbeat and shaking, etc.), can only mean imminent death to our struggling lizard brains while it's happening.

When it all finally stops, it's almost like cheating death somehow.

Today, P contacted a big migraine center in Paris, as it's high time I had this looked into by the most expert eyes around.

So boom, just didn't want to leave any false hope for the ones still on prednisone, who let me know how encouraging the previous post was.

To add to the bliss of the storm being over, here is a  birthday flower-avec-feet photo I photoshopped up yesterday which turned out nice.

The bouquet is from P and it smells wonderful.

The orchid is from a Dutchy friend here in town, whom I enjoyed lunch with yesterday, along with her pleasant pal from Germany.

Hard to believe, but that was my first girly-lunch date here in over three years.

Helluva good start to a new year, I'd say--aside from the brain blowout later--which I'm choosing to not include in my birthday opening ceremonies RAM.

Now, time to enjoy some of the belle day here.

++++vibes,

: J

Five Sweet Thangs

G'Day, Readers,

This is a birthday/update post to share some good things I've happily been experiencing since reaching 0 mgs of prednisone back in February.

1. Over the last month+,  I've been having a few better days, days with just a smidge more chi and a slightly lower pain floor in ye ole joints.

2. I have also noticed, that while I am still dealing with regular migraines, the ones I've had lately are like kittens compared to the raging lions they have been for way too long.  So glad to share that during the last 3 migraines, I have NOT puked like a dragon repeatedly!  In fact, during one of these recent attacks, I was actually able to be upright and even managed to ride that one out SANS-migraine meds, (triptans).

WOW.

YAY.

3. More promising news: I recently had a routine eye exam and was tickled to see that my myopic prescription is now back down to what is was pre-chemo/pred, etc!  The preceding check-up was done while still on pred and at that time, the correction had increased significantly.

4. Also in the prednisone-recovery dept: over this past month and-a-half, I have delighted in seeing a marked increase my stress-handling chops.

No more shaking/shuddering when upset, (which was disturbing until itself, lemme tell ya's), no more BP spikes and being bowled over by the smallest things and instead-- now a LOT more lovely ole me.

Yyyyyyyup, I do believe that my adrenal glands are much closer to online than they have been for too many years.

And #5?  I noticed this yesterday, Juan Day at a Time now has over 40,000 hits!

Thanks to everyone out there who takes the time to read it, with high-five's to all who leave comments and send me messages.  They're much appreciated.  As are the new friends I have made since creating it.

Makes me all the more glad to have not chosen to delete it last year while in the throws of another mojo-mashing round of prednisone withdrawl.

I hope this post gives anyone out there currently dealing with that monster of a drug, a good dose of hope for the future.

Getting off and over long-term prednisone use takes not only gob-smacking amounts of time, but full-tilt tenacity and when that runs low, sometimes, more chemistry.  Bromazepan was what my docs offered when things got just way too dark and thanks to it, I managed to reach precious sleep many dark nights when anxiety blew those z's outta the water.

Sleep is everything.

I'll close with noting also, how more than one specialist over these treatment years has suggested cannabis--for not only the physical pains, but the soul type, too.

It is a cruel and crying shame that medical cannabis is STILL illegal in way too many lands.

Now, back to my birthday boingin', which already started by singing and dancing with Tony to some classic 80's Toronto rock while the mornin' joe perked.

+++vibes+++,

: J

Canadian in Distress

I am so Canadian.

So I had a bit of a long mornski, starting with waiting outside in the cold wind for quite a spell--for a cab that never came.

For a while that is.

Today was my bi-annual rheumy app for the MPA and while that itself is usually quite agreeable, the cabs to and fro were delayed considerably, due to not only strikes again in Paris, but the Seinne's belly about to burst.

I should have of course, ordered the cab ridiculously early but living and learning.  It's not every day there are biblical floods across France and whoa.

So yeah, the day was long, but the app was damned inspiring:

The good prof showed me some of his research from the first MAINRITSAN trial, (and a-b armed trial of Rituximab vs Azathioprine for maintenance therapy, post-remission).

Rituximab came out the winner and yay for me to have had that very therapy--still effective over a year post last infusion.

An even bigger yay was seeing on an actual research chart, how the type of ANCA Vasculitis I have, (MPO+ for those in the know), is the type that relapses LEAST.

In fact, my numbers are EXACTLY what they were while in treatment.

Tres TRES. TRES. COULE.

EDIT: It must be well-noted that while my numbers are all lovely, there are some Vasci-docs who basically disregard them.  The reason?  Well, I'll just share a slice of my Q&A time with the Prof to illustrate:

ME: Do you see patients who flare even while in medical remission?

PROF:  Yes.

Why I'm still in a world of daily pain is still a mystery, and I'm about to get on board with another specialist, a bone-rheumy whom the professor himself recommended and looking FORWARD.

Sidebar: Re: switching BP meds to Losartan would be a waste, as the Prof said the improvement in uric acid levels would likely only be incremental.  And I'm not keen to rock the stable-boat.

He also said my uric acid levels were not alarming enough to medicate yet.

K.

So yeah, these here golden-delicious-berry and oat flour darlings--panned up using REAL butter for once, dammit, (cut with EVOO); they  were required today, as I was pretty ragged by the time I got home----------this afternoon-------------from the early morning appointment.

Then I pushed it post-painkiller on a low-chi walk with Mr. Pully Pants here to the river, as I really wanted to get a gander at the bulging banks and------whoa, painkiller well spent, sadly.

May the sun come to La France SOON.

Feeling fairly fatigued and as said, distressed even--no doubt in relation to all the cold rain and grey for so long now, coupled with today's activities, it's easy to see how WELL those mofo'n
pancakes went down.

The French like to laugh about Canadians and pancakes but to that I say:

Crispy, crumbly, buttery edges, so moist and densely cakey inside-- a big cherry with each bite exploding sweet, sassy tartness into the maple syrupy 'n honeyed-up heaven.

*mmgulllllllp*

I won't be hungry 'til tomorrow for SURE.

I didn't measure anything but for those who also eyeball, here's the recipe:

~1& 1/3 cup organic oat flour, (I haven't used wheat flour since trying it.  It simply ROCKS.)
Maybe 10 grains of fleur du sel, (sea salt), mortor'd.  (I usually skip the salt but wth, the 'lytes were good last testing.)
Small pinch of backing soda.
Couple tablespoons of ground flax seeds.

~1/2 cup milk (I used real for the first time ever, organic, (I usually use oat milk etc.)
1 egg

^^Shaken to a froth together and then whisked into the dry ingredients.

Berries, cherries.   (Walnuts?  Chocolate chips?)

Makes two biggn's.

Now, it's time for me to get horizontal for a good while/rest of the day.

Bon ap and weekend, All,

A Canadian, far from distress,

; J

What's the Meming of This?

Allo again, All,

Been at the drawing/graphic board again, this time, for a cause.  One that needs to be addressed the world over--SOME countries more than others, eyeball roll.

Here they are, enjoy...

Make Your Own Font

G'Day, Readers,

Writing today to share a link to a fab site that transforms one's own handwriting into one's very own font!

This is something I've been wanting to do for many a yonk and now, it's do-able with ease and for free.

I ended up creating only printed fonts, as getting my cursive letters to link up properly was a bit of a challenge, so I aborted.  Plus, I never write in cursive anyway so...

Perhaps the more tenacious ones out there will have better luck/skillz with the actual writing.

Here's the font-makin' link for the keen:  http://www.myscriptfont.com/

In other news, the latest kidney test results are in and I'll sum it up with the number 35.

Yup, the ole GFR is down to 35 again.  A number not seen since the chemo days/ze.

I recall the outright joy I felt to see it finally get up to that number, as it meant I was no longer in stage 4 of 5 on the renal damage scale.  To see it there again now, (after it being above 40 at one point), is something that I hope HARD will soon trend back up to its former glory.

I have been eating more fish and cheese over this past year and perhaps it's time to lean more on the legumes again?

I will also share that the uric acid is once again, WAY too elevated, (after going down some for a while, though still above max), and that too, is un-nerving.

Reason being, high uric acid levels/gout is linked to early death via adverse cardiac events--even in the healthy-eating/non-boozing/non-smoking groups.

(Click to check out an interview with a doc discussing his studies on gout.)

So of course, I've been back in research-mode again and I have recently come across a *potential* fix, in the form of a different BP med--an ARB called Losarten, which also helps reduce proteinuria, just like the ACE Inhibitor I'm on, (Ramipril).

What makes Losartan worth talking about with the Neph and Rheumy is that apparently, it also helps the body excrete more uric acid.

I will be discussing this and much more with the dear ole Prof next week.

'Til next time, "write on",

; J

#Oldisthenewblack

Gooooooooood Morning, All,

Writing today mostly to share some recent visual art, this time a return to acrylics after more than a decade off that horse.

This piece was inspired by a photo P took near the river last summer and in these particular times of so many hippy/activist-types movin' on into their golden years, turns out it's a pretty hip painting.

Just last week, P showed me a meme of an elderly person sporting a black T-shirt with big white letters boldly stating, "Old is the New Black".

But my chosen subject matter is a total coincidence, I just loved the photo and memory.

I call this one, "The Gang Gets--Their Bench".

It's a bit of a French-English pun, as the photo was taken at a "guingette", (pronounced, "gang get"), meaning, basically, a riverside cafe that also has live entertainment on the weekends.

In other less colorful news, I am not pleased to share that since reaching 0 megs of prednisone in February, I have been struggling with increased joint pain from my fingers to my toes, along with still,  random and repeating lightening bolts of harsh pain all over too--which I REALLY hoped would do a fade out as my body adjusted to being off the dreadnisone, mais non. 

I will be seeing my Rheumy-Professor in early June to talk about what I feared a long time ago, and that is, the distinct possibility that all the prednisone I have been on for the last three years has been masking yet another condition, which now that I'm off the stuff is rearing again.

Or these pains could just be due to damages from the MPA.

Or perhaaaaaaps, the pains are all just due to osteoarthritis, which came on the scene in '06/07. 

X-rays then showed: a lumbar disc already almost gone, deterioration between C4-7 with a reverse-angle in the neck thanks to more than 8 seconds as a rodeo-rag doll impersonator back in the day, as well an MRI that showed right knee deterioration.

And still, I try to manage this, by the day's end, usually crippling pain with merely nearly-useless paracetamol, (Tylenol), and off and on, low-dose Tramadol.

Due to an opiate/oid allergy and the kidneys, my pain management choices are minimal.

It will be JUAN FINE DAY when ole France finally gets on board the medical cannabis train.   But that's a subject for an entirely new blog post.

And even though I thought that by now, THREE years post-acute renal failure and after thousands of milligrams of prednisone, multiple rounds of chemo AND Rituximab, things would be different--I am still basically 90 years old and in the sack by 7 or 8pm nightly.

On the upside, I recently had blood work done, (MPA control, not kidney), and amazingly, almost all the values were in normal range!  (Total cholesterol was a hair over the line, but not the LDL nor the triglycerides and yay).

ANCA is still 1:20 (negative being under that), but with near-non-existent MP0/PR3 levels, coupled with the stable kidneys, it all adds up to my being considered still, in medical remission from Vasculitis and yay again for that.

And more high-fives to healthy eating.

And this week, the ole beans will be tested too, so toes-crossed for continued stability there.

'Til next time, likely post-Rheumy-visit, bon vibes to All,

J

Purple Petals

G'Day, All,

This morning, while out walking T with the huge harmonies of Prince's, "7" floating above the heaviness of his passing, a massive, booming sound faded into my thoughts and brought me back to the walk.

I looked up to see a youngish grandma-type across the street walking with a stroller, brow furrowed slightly into the hazy sun--somehow surrounded by enough decibels to impersonate a distant tornado.

For a spit second, my amused brain bought that it was she and her wee stroller making the thunderous rumble, her scrunched-up brow now looking more like a seasoned Walmart warrior's behind a loaded cart.

I actually laughed out loud, when from behind the hedge she was flanking, emerged a building super, pushing a large, empty plastic trash bin.

Still grinning, I thought, perhaps Prince woulda dug that too...

I took notice of so many purple flowers today.

 Rest in peace and play, Prince and thanks for every perfect note.

+++vibes to all left longing,

J

A Free Bee

G'Day, Readers, 

So yesterday, with the weather finally warming up around here, I decided to spring clean our lovely sun room.

After a winter on its own, it had gotten pretty--not pretty.

I dusted and windex'd everything, stripped the couch of it's cover and washed that and then began the mega-sweep, which of course meant loads of bug cadavers and jurassic-sized dust bunnies along with the usual mud clumps and foliage courtesy of our friendly neighborhood Labrador-man.

In mid-sweep, I noticed that amongst the many casualties of winter, there was a live one.  A wee bee that was fighting with the fuzz, struggling to free himself.

I had sent him on quite a tumble with the sweeping but when I noticed how very much alive the lil guy was, I started sweeping in a wide berth, niiiiiice and slow in his vicinity.  

I went in to prepare a soapy bucket and when I returned, he had managed to clean himself off and was slowly heading for the sliding door.  I left him be, haha, and started mopping at the other end.

Upon returning from a bucket-change, I couldn't see him anymore, so I inspected further and saw him trapped in the grate of the sliding doors, now covered again in debris and having a helluva time trying to pull himself out.

I tried putting the broom bristles near him so he might grab on for me to lift him to safety, but he was having none of it, preferring to struggle and get nowhere.

So I figured I needed to win more of his trust and placed the broom head further away from him, holding it perfectly still, then moved it even further, trying to convey zero-threat.


At that point, he was either just resting or perhaps also contemplating the situation and stopped fussing about, so I slowly moved the broom closer, but he still wasn't going for it.

So again, I moved the broom farther from him and left it like that for a bit.

 He was wiggling only a little now and then, so I moved the broom maybe a few cm's from his fuzzy bee body and it was then that my heart rather lept to see him crawling TOWARDS the broom.

He crawled right under it, so I gingerly lifted it and to my utter delight, HE WAS HANGING ON!

Up he went with the broom and out the window onto the lavender plant outside, where he sat, re-cleaning himself and looking pretty bee-zen.

The whole  exchange left my heart humming, so touched by this small creature's intelligence, tenacity, patience and dare I say, trust.  A trust that is even more impressive considering that our whole interaction started with me basically, attacking the lil guy.

Bravo, wee, free bee.

++++Spring vibes,

: J

The bee pic here is a still from a kid-video of mine called, "A Small Bee", you can check it out here.

"A Sunny Day"

Good Morning,

This post is to share yet another new music production with vous:

https://www.youtube.com/watch?v=Ln08E3G8Q4M

I'm still regularly blown away with the mojo-massage that is just being up to the task of serious sessions again.  Even mentally, I am seeing that all is well in the attic as I created this new song while learning (some of) the ropes of a new (to me ; ), professional music production software.

Since letting this new track outta the corral, some lovely people have been asking if I've been feeling better--a natural assumption when taking in the energy of this last one.

The short answer is for now, no.

But at the same time, I'd say there is some tres coule bio-chemistry going on.

I did the bulk of the recording for A Sunny Day last month, after most of the adjusting to 1mg of prednisone was over--and of course, usually in the mornings.

Then came the final taper to zero.

*dead air*

I must say, it got pretty bummed here for a while and I'm am still finding 0mgs a monumental challenge.  Challenge being, more pain in even more places than I've become accustomed to.  Creaky, puffed-up pain that's way more on than off.  Like my spine is too big for its column.  My brain too big for my skull.

I wish I could just take tramadol every day but for various reasons that's not an option.  One being it's been causing more of an allergic reaction than usual lately--making me Itchy McScratchy well into the night.  This of course messes with the precious z's even more than the traveling hot-flash gong show and actual pissing contest I've been in nightly since the renal failure. 

(If anyone sees my deep sleep out there, send it back home please.)

So with great thanks again to P, the mixing phase of A Sunny Day was done all in short sessions over these last few weekends, with his hands on the virtual mixing board and me flat on the floor (safer from gravity), where I voiced my (seemingly? ; ), endless tweak requests as producer.

I wrote this wee love-jam back in '02, before P and had even met and it's tres close to my heart. ("Kokoro", in the lyrics, means "heart" in Japanese.)  To set it free after over a decade in the vaults is some serious medicine.

A strange kind of convalescence-medicine, as I had to be recovered to a certain point before I was even able to make/receive it.

Needs me s'more!

Hope it taps your toes.

++++vibes,

J

Well, that was---

Just about as crappy as I thought it would be!

Hello again, Readers,

I was hoping that (against all precedent), this last wean to zero mgs of pred would somehow be a non-issue, but naaay, it was pretty tough, especially on the ole noggin due to even more migraines than before.
I lost a bit of weight, as is the tapering tradition and basically just head/heart-butted my way through the blackish blues that for me at least, have been a huge part of tapering from 10 mgs down.

But as of the last couple of days, I am smiling again and for that I am so grateful.

I am also not dealing with constant headaches, interrupted by migraines, which alone is a reason to smile madly like the Joker.

What has also helped me immensely during this final phase of weaning has been my recent return to music production and the other day, I shared a new track, which I share here too as it's yet another testament to blessed recovery.

This one is a ballad, written some years ago with Bob Boisadan, the other half of our duo "Dragon & Rosebud".

I recently began working on yet another snappy vault tune of mine, pretty wild-horsey-ish and I'm looking TRES forward to letting it outta the corral.

Now, as the day is a perfect blue and sunny one, I shall head out into it for a long and FINALLY re-energized walk in the park with my Tone-Bone here.

With +++vibes and a smile again,

J




PS:  THIS goodness:
Yahoo for me and Grampa-T, as we haven't hoofed it the long way 'round my favo park in--I think probably close to a year due to the place under major and wildly loud construction.

And on a helluva a perfect crisp wintery French day, too.  

Sometimes I quite like this country.

Cherry: I got home and tested the BP, (which I admit to not doing for quite a while for some reason), and it was a delightful 117/69@60bpm.

A BIG, FAT, FABULOUS---

ZERO!!!

ZILCH!

NADA!

NNNNNNNUTTIN', HONEYS!!!

ZERO GLORIOUS MILLIGRAMS OF PREDNISONE is what I am now NOT taking!!!

After three crazed years of ingesting this life-saving/hell-wreaking drug every damned morning, (and way more during infusions), I am NOW FINALLY, DONE WITH IT!

HAD.

TO.

SHARE.

and with a mighty big smile too,

: J

 

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'.

+++vibes,

J

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.

+++vibes,

J

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,

J