Tuesday, December 22, 2015


Good (and I mean REALLY GOOD!), Morning, All!

Writing today some faaaabulous news after having my first appointment with my new nephrologist yesterday.  (The one who saved my life, nearly three years ago already and wow, moved to the Alps a couple months ago).

Not only did the new neph and I hit it off, I got some FANTASTIC news!  (After asking her about it--word to the chronically ill and wise to always ask.)

Yes, folks at home, after nearly three years of having to choke back this thick, yellow paint-like liquid twice a day, right smack dab in the middle of meals, I learned yesterday that I can FINALLY STOP!


The stuff is called atovaquone and it's an antiprotozoal agent, (given to patients on immune suppression who are allergic to Bactrim, an antibiotic).


It. Was. Glorious.

In less fab news, the reason I saw my new neph ahead of schedule yesterday is due to some ongoing stomach, esophagus, liver-area and right flank issues that have not resolved since the renal colic in October/November.   Pain I have felt all too well before too.

Hoping that a few weeks off of this fluorescent goop will result in a marked decrease in the belly/gut/liver problems, cause really, THREE YEARS of this stuff?  It's just GOTTA be the problem, it's GOTTA BE.

In any case, soon, I'll have more blood tests and scans done to rule out stones of any kind.

And for anyone out there keeping count, this new deletion brings my daily med count down to only TWO per DAY!!!


The prednisone and the BP meds and that's IT!  (Not counting vitamins or pain managment meds.)

And soon, (in January), I will be totally off the prednisone too!

To think, back when this all started I was taking 10 different meds a day, (plus chemo and other infusions), and now, a blessed, measly  TWO!

Hoping hard to soon be blogging about no more abdominal probs at all.

TALK ABOUT AN AWESOME CHRISTMAS PREZZY, and on the Solstice, no less.

So voila, I had to share, especially with those out there feeling like they might never get off the  damned med-train.

 ++++bon Holiday vibes,

: J

Thursday, December 10, 2015

Some Handy, Healing Hacks

Hello again, Good Readers,

This here is yet another post I've been wanting to write for a while, regarding some tres useful "life hacks", good not only for  people living with CKD or chronic illness, but for all folk, so here goes.

1. Keep a spray bottle of white vinegar in the kitchen.  It's great not only for Green veg, fruit and surface cleaning, but it's a formidable first aid for minor burns.  I have used it countless times after say, accidentally connecting my forearm to the upper element of a hot oven or (perhaaaaaps ; ), micro-managing failing flames in the fireplace.

Hitting a minor burn asap with white vinegar and keeping it there, (sprayed onto a tissue) for 10-20 minutes, can mean the difference between a painful, blistered burn and NOT HAVING ONE AT ALL.  In my experience.
High-fives again to ole JD who introduced me to this years ago.

2. Using antiseptic spray or hand sanitizer in place of deoderant.  I haven't used antiperspirant since being diagnosed with kidney damage and only wish I'd passed on it for all those years preceding.
Not only is it efficient at killing the bacteria which feed on the proteins produced when people with yellow, wet earwax perspire, (it is the waste products of the bacteria that actually smells), but it works for a good 24 hours too, in my experience.

3. This one's for dog owners, and specifically, the ones who own the floppy-eared types prone to ear infections.

Again, it's a vinegar hack.  Mix 2 to 1 white vinegar and water, soak a tissue with it and massage into the ears weekly to keep those gross yeasty beasties at bay.

This works even on our Tony here, who has been on prednisone for most of his life.

Et voilahhhh.

A lil Happy Holiday gift from me to vous.

Wishing you all a heart-warmed, safe and memorable one this year.



Wednesday, November 4, 2015

"Dream Squatting"

G'Day, Readers,

Over these past few months I have been regularly mentally hugging something quite wonderful and I really wanted to share it with all the people out there in similar medical shituations, especially with those who are just at the beginning of that seemingly endless road of infusions, tablets, blood draws and emergency rooms.

The wonderful:

Compared to a year and a half ago, there is a huge difference between how then, I would note in my personal journal with a great sense of accomplishment, everyday things which most people take for granted--or as annoyances even.  Stuff like dog-walking or floor-mopping or doing errands or laundry.   A year+ ago, I was noting it all, with downright pride.   (But don't get me wrong, I certainly do mentally note well every little thing I do--especially when they are done in the afternoons and sans-tramadol.)

Nowadays, I write in that journal far less often and the "accomplishments" I list now, are more like they might have been say, five years ago, before the MPA diagnosis, (mixed with the extra "thing" du jour, the latest one being the colic).

Things like painting not one, but THREE pieces in a week, or writing and recording a new song with 10 tracks of harmonies recently, or like just this morning, singing and editing the vocals for a cover song for a DJ connection of mine, followed by the graphic end of the work for this here piece, called, "Dream Squatting".

It's directly from a dream I was lucky enough to be blown away by the other night, in which I somehow had the view of the "me" in the cowboy hat, in front of that pulsating, vibrating, humming sun and moon, while being "me".

Tony was added in post.  

All of these feats would simply not have been, only a year and a half ago and I write these words for anyone out there staring at the great wall that is chronic illness and the endless heavy, dangerous treatments and pain and fatigue that goes with it.

Sure, I did the bulk of these works either in the mornings (as I still only have about 5 hours a day of solid chi), or with tramadol-assists in the afternoons, but still, I was not only able physically to do these things, but able to receive the whispering muses once more. 

It just takes considerable time--probably as much time as it took to wear our bodies down to the nubs they became.

So please, to those struggling right now, dig as deep as you can.

Nothing in this whole Universe is more worth it all, than YOU.

And I wish you patience and I wish you grace.

Now it's time for me to be horizontal.



Thursday, October 29, 2015

Halloween Apples

Ghostly Greetings,

I've been wanting to post about this since I discovered it over a month ago, but due to a three week+ dance with the mofo that is renal colic again, (kidney stone pain), I've been holding off.

Even though I've been mostly down for the count lately, I've actually managed to paint a few pieces and write and record a new song, plus a cover of an 80's Brit hit for a certain DJ friend o' mine too, so ole RC hasn't gotten the best of me.  Granted, those feats were all done with tramadol-assist or between the clockwork colic tides, but I'm pretty happy with the creating recently.

So here's what I wanted to share: the daily 100mLs of pure cherry juice is no longer keeping the uric acid down and my levels are now unfortunately, higher than they they have ever been.

I have no idea what could be the reason for this but there are many possibilities, starting with the fact that my cherry juice source is artisan so, perhaps, batches vary(?).

One thing for certain is that the change was not in relation to my recent Canadian travels, as the the levels went up before the trip.

The fact that I have been dealing with kidney stones again may be in relation to the uric acid increase--IF the stones are that type.  (I've not obtained a sample to have tested.)

That said, I must note that the first time I experienced renal colic was also following a trip to Canada and I can't help but wonder if that huge disruption of Circadian rhythms isn't a colic-factor.

HOPE NOT and I guess I'll find out if it happens three times in-a-row.

All I know for certain is, I am no longer writhing in torrents of unbelievable crushing pain and YAAAAHOOOOOOOOOOOO!

It's one helluva show, that renal colic.  From constant, full torso (back included), grinding that smolders on for hours on end, to the wild stabbing, actually-feeling-it-scraping-its-way-through your-innards shrieking kinda pain that rendered me fetal and grunting through clenched teeth.

But, like I also noted, in between the rounds of colic/while tramadol'd, I have also gotten back into "Aquarelle", (colored pencil crayons, that are then painted with a wetted brush, turning a sketch into a painting, basically).

Much more fun and less messy than actual water colors, in my opinion.

I decided to paint some rather conventional things for the first time ever, like flowers in a vase, a running horse (for P), and this here little French apple, just in time for Halloween, it was delish.

So, not only am I obviously beyond pleased be finally coming outta this colic meat grinder, I got to spend some pain-free time yesterday with a beautiful old friend who is in France right now for her honeymoon (full mooned, too and bravo, guys).

I met this sweet lass when she was but eight years old and as much as I may bitch about fb, I am high-fiving it for being the bridge that reconnected us.

MUCH laughter and many smiles were had with her and her new Hub. 

She has become a doctor and how poetic--what with me being somewhat of a professional patient now.

So voila, I'll write again on this uric acid biz after my next blood tests, which I hope hard will show a decrease in those levels.

Happy Halloween weekend, y'all!



Tuesday, October 13, 2015

Hand Botox?

Hi, Readers,

And especially to those suffering with Raynaud's or their caring friends.

I've been researching the hell out of this condition which, since my trip to Canada has been worse than I have even known--right into the ole nose, which is cold through to the septum. 

After a whole day of no blood flow to the the extremities, I can say that it gets pretty sore.

And frustrating.

And limiting.

And it certainly does nothing for the mojo, this new knowledge that I am no longer capable of simply keeping my own body warm enough.

So today, I share a nugget from the Raynaud's treatment front that is not in pill-form, (calcium channel blockers are seemingly the go-to medication used to ease the symptoms of Raunaud's and as I'm already on blood pressure meds, I'm not keen to add another/its side effects to the "daily meds".)

I still don't know how well botox mixes with my Vasculitis, nor with CKD, but I'll surely be bringing it up at the next appointment.

Here's a C&P of the promising results from a study of 19 Raynaud's patients, after botox was shot into the palm area of the hands:

RESULTS:  Sixteen of 19 patients (84 percent) reported pain reduction at rest. Thirteen patients reported immediate relief; three reported more gradual pain reduction over 1 to 2 months. Three patients had no or minimal pain relief. Tissue perfusion results demonstrated a marked change in blood flow (-48.15 percent to 425 percent) to the digits. All patients with chronic finger ulcers healed within 60 days. Most patients [n = 12 (63 percent)] remained pain-free (13 to 59 months) with a single-injection schedule. Four patients (21 percent) required repeated injections because of recurrent pain.

CONCLUSIONS: Vascular function is abnormal in patients with Raynaud's phenomenon. Although its mechanism is unknown, Botox yielded a distinct improvement in perfusion and reduction in pain in patients failing conservative management. Continued research may lead to more specific and reliable treatment for Raynaud's patients.

So that's it for me on another gorgeous French fall day, about to head into it for a pooch walk, bundled up like Kenny from Southpark.



Thursday, October 1, 2015

Mountain Mawwwwma

Hello, again, Readers,

Long time no blog and here's why:  I have been back in the Mother Land over the last month, Canada, in the incredible Rockies, with my beloved family and some very special old friends who drove many miles in order to hang with me while I was there.

It was, in a word, SUCCESS.

Not only was it a wonderful time with so many missed people, (due to health, I hadn't been in Canada for a couple of years), but this lil body of mine did inspiringly well, from the 9 1/2 hour flight there, all the way to the night flight, in my own row so I could lie down/not be in tears), back to Paris.

I'm happy to share that the blood work I had done prior to leaving showed continued remission ANCA levels, meaning, the Vasculitis is still in check and that's after no Rituximab since December, '14.  A little decrease in GFR and increase in uric acid, but here's to those trending better soon.

Now, for some super-high fives to certain stellar Airtransat employees:  On the flight there, I was deeply touched by the kindness shown by many of the flight attendants on flight 709 to Calgary on September 7th.  Here is a shining example: During beverage service, I was accidentally baptized in a little cold water.  As I was brushing the water of myself and phone and apologetically offered a drink,  I asked if I might have a hot tea just to hold in my cold, gloved hands, (my Raynaud's has gotten progressively worse over the last year; hands, feet and shnoz).  He said, "Sure!", then quickly added, "just a sec, I'll be right back".

Minutes later, another attendant appeared with a one liter plastic bottle filled with piping hot water and wrapped in paper towels, which I held and then rolled on my feet with utter delight and relief for the rest of the flight.  They re-filled it twice for me before landing and bless them all.  Having cold extremities can get to hurting after not too long.

So that's how the trip started, talk about a good omen--not even touching on how much I enjoyed sitting next to a beautiful dame named Patti and her adorable and bright son Mauricio.  By hour five, and practically all at the same time, the three of us remarked on how quickly and agreeably the time had passed thus far, thanks to each other.  So if you guys are reading this, MUCHOS GRACIAS again!

I will always remember chatting with Mauricio as we slowly made our way to the passport booths upon arrival where he asked me why I can't eat much salt.  (He had noticed that I had brought my own food with me for the flight.)  I asked him if he was familiar with the organs in the body and explained that my kidneys had been damaged significantly, now only 40% functional and it is the kidneys that regulate salt, (sodium), and that too much can be dangerous for people with kidney damage.

He then said something that is just kid-perfection, underlining his brightness, "So--" pausing in more thought, "it's like you're allergic to salt."

Delighted by his take on it, I grinned, "Basically, yes!  That's a good way of putting it, Mauricio."

I really enjoyed my time with that lil guy.

My first two weeks in Canada, (spent in my very own charming alpine flat, just a short walk from my folks' place), were physically a little challenging with a sinus cold and this time, much more time-zone-adjusting than I've ever known.  But that was all wrapped in a warm blanket of family-love and some truly cherished reunions with a few dear old friends who made journeys to see me again.

The pic above is just one of many keepers, thanks to one top-shelf Indian Summer the Rockies are enjoying this year.  Many days had temps above 20C--at least on the southish-facing balcony of my parents' apt.

SO many super-natural, sun-drenched strolls were soaked in over there, as illustrated by this pic I snapped during a walk with Mumsy in the grounds of their new complex. 

I was expecting to see a forest sprite jump from behind a bush at any minute.

Back on the subject of Raynaud's, I was quite taken aback to see it in full gear one chilly morning after I walked the short 10 minutes to town in 1C weather.  Even though I was well-dressed in thick sweater, a jacket, gloves, a scarf, a hat and even holding and nosing a Hotshot aka Hothands packet, by the time I got to my destination, my throbbing fingertips felt like both fire and ice were eating them.

When I removed my gloves after a few minutes in the store, the first knuckle of every digit was incredibly red.  It took about 10 minutes of breathing on them and arm-pitting them before they returned to their usual pale, chilled state.

I've done some research on this syndrome and have learned that calcium channel blockers are often prescribed to decrease the symptoms, which I discussed yesterday during my final appointment with the nephrologist who actually saved my life back in '13.   (He's moving to the Alps.)

I now have a prescription for some blockers which I will of course, check the side effects of well before adding yet another prescription to the daily meds. "Give us this day..."

Over this past year, I have become quite intimate with rice and cherry pit-stuffed microwavable sacks, running toasters, cranked hair dryers and boiling pots of water because of this recently amped-up Raynaud's.

As a side note on that: while in Canada in a chilly, (to me), supermarket as I hothanded my frozen nose with a now habitually gloved hand, a family member actually said to me,  "Hmmm, they're not thaaat cold.  Mmmmmaybe it's all in yer head?"

*dead air for a few flabbergasted seconds*

Amazed by the insensitivity/far from astute comment, I responded with, "actually, it's in my hands.  And my feet.  And my nose."  And I think I also mentioned that it has been diagnosed by a professor of rheumatology on top of it.

*****Word to the healthy who are talking with the chronically ill:  if that phrase ever somehow pops into your thoughts, please, do what it takes to keep it there.*****

I was sure grateful to have a gas fireplace in my lil apartment, that's for sure.  And every time I was visiting the folks, my dear Mama always had not one but two hot water bottles at the ready, one for the feet and one for the hands, (and often too, for the usual, still mysterious ongoing, daily spine pain).


I am blessed to have such a caring family and it was so good to be ABLE to be with them once again--even if it always ended well before sundown thanks to pain and fatigue.

Those short days made for pretty limited socialization time, as if I was only there for a week and a half as opposed to three.

Made the moments all the more precious.

Here's to my next trip there being with greater chi levels and thanks much again to the friends out there who touched base, but couldn't jive with my tres limited availability.

I've been back in France now for ~48 hours and aside from sleeping quite late each day and significant trouble reaching sleep at night, (damn these crazy menopausal hot flashes!), the jet lag this way is as usual, far less of an issue than it is going the other.  Perhaps, due to the rotation direction of the Earth?/Returning to one's usual time zone?

Time to nuke this lil rice sock again--for the fourth time while writing this.

I close with a note on seed/grain-stuffed microwavable heating sacks: I have learned that brown rice stands up to microwave heating far better than white does.  Makes sense, as brown rice takes longer to cook.

That's all folks, with ++++vibes as usual,


Thursday, August 6, 2015

A Timely Medi-Intervention

Hi, Readers,

This blog post goes out to the animal-friends out there after an emergency vet-visit the day after the previous post was made.

It was due mostly to that too-dark urine of Tony's lately that just wasn't getting any better.

After his elevated BP was taken, the way-too-low heart rate noted and the array of blood tests and scans were completed, the likely root of the urine problem, (as well as his thinning tail fur and yes, the big changes in his chi and confidence over the last year), was clear: hypothyroidism.

Our dear beasty has been on canine-thyroxine now for a week and already I'm seeing more of a spring in his step.

More steps too.

In a month we'll do another dip stick to see if the dosage is optimal.

I recently learned of the link between Addison's Disease, (aka autoimmune adrenal insufficiency, which has been thankfully well controlled since almost killing Tony back in '07), and hypothyroidism and I am most underwhelmed by the vet's lack of dot-connecting on the two--especially considering the notable tail fur loss for so long now.

In humans, (more women than men), this "fur loss" often manifests as thinning hair on the top/front of the head--which I actually knew about thanks to a hairdresser sharing that trade secret like--10 years ago and dammit.


Ironic high-fives to my own medical conditions as if it weren't for them and all I've gleaned since diagnosis, this discovery may not have been made in time.

My research-i-tis has also revealed that untreated hypothyroidism can often negatively affect the kidneys, so here's to the ole T-Pee straightening out by the next vet visit.

A visit that will surely include one hairy-eyeballed Q&A session on how he managed to not see those big, flapping hypothyroid red flags, especially in relation to the Addison's--and for over a year now.

Helluva price for an English-speaking vet, I'd say.

Regarding T's overly-golden showering, it might have just been the morning light, but I swear from what I saw on our walk today, his urine has already improved.

In closing, I hope that this post was of use, as the many seemingly unrelated symptoms of so many autoimmune conditions are often hiding under rugs due to their sporadic nature over such lengthy periods of time.

It is so important to be the grabbers of our own bull horns.  



Friday, July 24, 2015

" STILL", a poem...

Hello again, Readers,

Writing today to share some of how living with chronic pain can get, through a poem I wrote this morning.

Whenever possible, I try to see the good in things, I look for new hope when the old hope goes into retirement.  But when pain eats nearly all of the mojo--which can easily happen if it goes on for too long or gets too severe too often, the looking gets myopic.

Certain people in my life for some reason never ask how I am--only, what my plans are or what I've been doing lately. 

The truth is, I rarely have plans and the ones I do make are always with cancellation insurance, or do not happen at all.

"Plans" for me now are just being up to the tasks of the day, or rarely, lunch out with dear P or friends thanks to painkillers--which I don't take regularly due to side effects and to further spare my kidneys.

I haven't had an evening out in almost three years now and--wow.

Thankfully, with all the horizontality in this new life, there is the Net and its host of incredible educational tools, (there for those looking).  I am most grateful for my still tres-able-bodied-brain and I sponge up every knowledge-drop I can.

That said, there are days/weeks when these post-treatment pains and the deep-boned fatigue just gets to me; when my stunning lack of chi completely derails me.  I swear I have aged 20 years since the chemo and high dose prednisone--ending most days in an aching, often less than chipper, prematurely-menopausal hunch.

So for the souls out there who really want to know what chronic pain and illness can be like, and for all of us who walk this same, ripped-up road, this post is for us.

And even though the road is so damaged, it is also lined with deep-rooted trees of old friendship and with new, truly precious saplings because of it.

And as is the tradition in my wordy-world, I sometimes self-medicate with poetry, so here's today's:

by Juanita Grande

The hole I know is often
One I stand by, at the edge
Of a tempting depth to drop in--
To like pennies, copper red

The long screws always tighten
And gravity grows strong
The ring I used to fight in
Now a show to look upon

The good days seem to lessen
And I feel the spirit fade
Dreams less often blessed with
All those animals I praised

I used to think that time would
Slowly bring it back to me
That "just another month" could
Calm these bubbling, acid seas

But slowly I am learning
That I've aged at double speed
Still, I try to cool the burning
Still, I try to slow the bleed



Tuesday, July 7, 2015

Hydrotherapy, a new application?

Hi, All,

So here it is, the blog post I've been eluding to recently, in all its wondrous, mystical glory:

In a nutshell, while in Portugal after daily swimming in the Atlantic for two days, I noticed something.  Or more accurately, I noticed something no longer there.

It was not pain, but definitely a pain in the arse, which when in full gear, is utterly uncomfortable.  I refer to the ever-dreaded menopausal hot flashes.  (Which once again, for the newer readers, I have--prematurely, due to chemotherapy.)

YES: To my utter delight, after a couple of days worming through those blessed waters, my hot flashes decreased to maybe 2-3 in the whole WEEK!

That's a considerable drop from the usual 10-20 a day and, the ones I did get while there, were more like hugging a cute, warm baby for a few seconds, as opposed to the usual walking into a fire-up sauna variety.

It is just one more reason to move by the sea, I'd say, heheh.

Of course, there could be other factors at play here, like perhaaaps, the hot flashes are, (after only a year?), starting to taper on their own.

Or maaaaybe, it was just the cold temperature of the water?

Then again, it might have been those other-worldly-good, plum-sized and colored strawberries?

I kiiiiid.

EDIT: Looking back on this trip from near a year in the future, I think the lack of hot flashes was in direct relation to the fever I was running.  Ended up being quite ill after this vacation, sometimes not even being up to walking for more than a few meters at-a-time.

In any case, I'll be sure to experiment the next time I'm near the sea or even near a cold source of water like an unheated pool or lake.

I'm not hard-core-science enough to start taking several cold mini-showers/day.

That's it for today.



Monday, July 6, 2015

A Portuguese Love Song

Hello again, All,

Writing today to share a little more of my trip to Portugal with vous.

This is not the post I referred to previously, (about the magical ocean), which is still to come.  This stuff was just more pressing to/on my fingertips:

While spending so much time on the endless beaches, I saw an unusually high number of disabled children and what struck me more than the high rate, (or do I just pay even more attention to this world around me now?  EDIT: In hindsight, I realize that this is a popular family-vacation destination and that's the best explanation, methinks), was how beautifully embraced and supported those individuals were by their families.  Grandmas and brothers and uncles and aunts, all taking turns with the considerable load while others chatted or went to cool themselves in the fresh waves.

I even saw a disabled dog that just stole my canid-heart.  The care from the older couple who owned him was as deep and wide as the Atlantic he eventually was paddling around in, once helped there in a harness that held up his limp rear legs.

He looked like a seal to me, (some kind of Doberman mix), with an over-developed chest, showing years of lameness in the back end.   The first time I saw his lovely mug,  he was looking longingly at a black Labbish yahoo who was rolling and snorting and running around us all just meters away.

I remember being amazed at the apparently impressive "stay", he was doing--until the woman attached the harness and lumbered through the deep, soft sand with the guy's hind quarters in tow.

The man was already in the water and when the three united, dog now beautifully bobbing around and far from compromised, (a feeling I know well too, I LOVE THE WATER), it brought the sweetest tears to watch him going for some mini-water fetches, happy as the happiest clam.

Watching the man massage the floppy hind legs and paws of the seal after he was out of the cold water brought even more touched tears.


The family noted above, had a severely disabled boy, (mentally and physically), who was in a tres high-tech wheel chair, so damaged that every 5 minutes or so, one of the family members would need to drain his windpipe with a small suction hose inserted in his trachea or he would start choking.   He couldn't speak or move his legs and spent more time yelling and hitting his own head, (hard), than playing with the tablet or toys in arm's reach.

The family would rent a couple sets of chairs and parasols, (we saw the group more than once), and I do believe also, the set in front of them, so he would have an unobstructed view of the ocean, (there was a boardwalk close to the rear row of chairs which got his chair to the parasols.) 

It was quite the heart-cozy to see how closely bonded they all were and how much they all did together to give that boy a good life, sharing the load with smiles.  I can't imagine how hard that would be sometimes, all of it--as what we saw was but a slice.

I saw other much less physically disabled children with seemingly awesome families too but really, this group for me, took the care-cake.  All so happy and relaxed and TIGHT.  They all helped me immensely to once again, put my own medi-merde in perspective.


In hindsight, I wouldn't be surprised if after seeing my lame arse, slowly and laboriously maneuvering itself around, grimacing in pain, that they were thinking similar thoughts about me.

Hilarious.  In a non-laughing sorta way.

All this to say that I am more than grateful for this trip, in so many ways, these here being but a few.

Others, being painful but well-learned lessons on both my abilities and my limitations these days.   

These daze.

Now, time to walk my own land-seal here, now that I most THANKFULLY am able to again, as of yesterday!



Thursday, July 2, 2015

Cherry Juice, 40 Degree Chi...

Hello again, Readers,

This post today is about cherry juice and basically, chi too.

On the cherry front, happy to share with y'all that my serum uric acid levels went from 439 umol/L in March, (started eating whole frozen cherries daily from April to mid-May, if memory serves), down to 405 umol in June!

A significant change, after drinking 100mL of pure natural cherry juice daily, for about 2 weeks.

That's an encouraging 34 point drop and here's to that being just the beginning.  I'll see the levels again soon and double the juice to see what that does.

Been enjoying it again since returning from vacation on Saturday.

Since my last blog post, much has happened.  Lots of it good, as in the above news, plus as noted, a fab vacation with P to Southern Portugal where wow, the affordable cost of living was a welcome change from that of Paris.

I really like how self-reliant in terms of produce and products that country is.  (Not even a pack of Barilla to be found at the supermarket, for eg., only Portuguese brands.)

And WOWISSIMO, that produce!  We enjoyed some rapture-level watermelon while there as well as some notable, (and YES reasonably priced too), white wines.

And I now have quite the crush on the Atlantic.

In Portugal, their cherries were the best I've ever tasted.  BOOM.  Same goes for the massive, almost purple with pleasure strawberries--unreal.  And some fantastic grilled fish too.  Mostly, though it was home-cookin' in our lovely and well stocked apt, located RIGHT. ON. THE BEACH.

And get this: I was even blessed to spot TWO Orca breaching in the calm-watered distance, on the summer solstice, no less.   Talk about soulfood.  Soul feast.

Here is a pic P snapped of me on the beach at the moment of whale-spotting:

It was a beautiful and most enjoyable sun, sand and sea infusion as you can tell, until--until, it most authoritatively wasn't.

On around day 8 or 9 this lil body went decidedly offline after what I'm hoping was just the result of too many days on painkillers + doing too much, (I was in that ocean a LOT, and even when it was pretty wavy).  The tramadol also likely dulled the mounting knee, stomach and GI problems too. 

I ended up a quivering, fevery, migrained, weak and extremely painful mass on the bed--needing help to even walk at some point, for some very scary last days of our holiday.

There was more badness but--TMI already.

By Saturday morning, the day of our return, I was indescribably thankful to be seeing straight again and back on my feet, (and not in Portuguese ER in some far off town).  I was able to creep around and even swim, well--bob around in the magic ocean again for the last moments of our time in paradise.

I say magic, because something pretty wondrous and interesting occurred while spending so much QT in that water and it deserves a blog post of its own, methinks, coming soon.

Good thing I was feeling better as next, came one colossal airport gong-show consisting of security searches, a pretty heated customs shituation making us even later, followed by us having to run through endless unmarked tarmac corridors a la Spinal Tap in 30+ heat, baggage in tow, (P shlepping THREE), finally lumbering down the right stairs and up some more onto the revving plane just in time.  I reached my seat in a gasping heap of renewed shaky weakness, scary-drained, teary and in more major pain.

Then came near five more hours of transit.

Since being back in Paris, (to a massive heat wave on top of things), I am now, after five days of much horizontalality, able to walk around the house almost normally again and with considerably less pain/varieties of pain going on.

And yes, all docs were informed of all of the merditude and I have a new blood-urine check up tomorrow with an app with the Rheumy-Prof soon after that.

I have also been taken off Ramipril, (BP meds), for a few days.  My nephrologist will hopefully adjust to a lower dose as one can only walk around at 100/60ish for so long and mine has been hitting those kinds of lows regularly for about a month now.

SO VOILA!  Talk about checking the hell IN. 

And now here I sit, in the darkened, heat-wave-shielded house, (no A/C, already up to 27C in here), ready to lie down again under blessed cloudy skies and temps to hit "only" 34C today.

Yesterday, it went over 40.

Just wanted to get that inspiring uric acid news out there for those keeping track, as well as give an update to those sweet peas out there keeping an eye on me and this ole bod these daze.



PS: I will make a bevy of changes to my future holiday MO.

Friday, May 29, 2015

The Juicy Goods

Greetings, All,

The goods?  The pure cherry juice has arrived, (thanks again, P!).

Here is some interesting reading from the renal point of view regarding hyperuricemia.

I started the experiment this morning in my mueslix which, for the first time in months, had fruit other than frozen squishy cherries in it, (apple 'n cinnamon).

Luckily, I just happen to have a big blood draw coming up (never thought I'd be typing that kinda sentence), at the hospital soon (for MPA/renal control + a couple of trials I am in), so I'll be able to see any uric acid changes right away.

The study below, (taken from here), used 90mL/day doses of concentrate, but according to the last sentence, that might be a bit of a waste.

Since I am not using concentrate juice, I will start with an even 100mL/day of this pure stuff and within a week, I'll know if more is needed.

I'm still not sure if the type(s) of cherry juice I'm using is the one that does the gouty trick but so far so good with nondescript frozen ones, so I'm thinking this stuff should have some kind of positive impact.

Hopefully, I'll have something down right gob-smacking to report soon enough.



"There were 12 participants in the study, and each was given two doses of concentrated tart cherry juice for each phase. Each phase lasted two days with a 10-day washout period in between. The first dose was given in the morning, while the second one was administered just before dinner.

The first dose was 30ml of concentrated Montmorency cherry juice mixed with 100ml of water. The second dose was 60ml of the same juice concentrate mixed in with 100ml of water.  Blood and urine samples were collected immediately after the doses were administered and in intervals for the next 48 hours.  

Results showed that levels of uric acid in the blood were reduced while uric acid levels in urine spiked, suggesting that the Montmorency tart cherry juice promoted the elimination of harmful acids in the body.

The experiment also yielded the same results whether participants consumed 30ml or 60ml of Montmorency tart cherry juice concentrate."

Wednesday, May 20, 2015

Cherry-Acid Developments

Bonjour, Readers,

For those keeping tabs on this, the latest blood tests show a decrease in serum uric acid by a 5mg/L.

While I'll take any reduction, this still means the my levels are a good 15% higher than the max of the norms.

So as I typed I would, I have already increased my daily cherry intake (now to 30/day), and hopefully the next blood test in early June will show even lower levels.

That said, the work will be done in a different lab than this one, (at the H), so there's that lab-to-lab variable.

I'll still be digging any decrease.

In the mean time, P this past weekend found a seemingly great artisan connection to pure cherry juice and I will pass that on to the organic store I frequent.  It'd be great if I could just drink what's needed as, I must confess, I'm a tad cherried-out.

That's it for today,



Sunday, May 10, 2015

Coco-nana Muffin Tops

Hello again, Readers,

Sharing what was perhaps, naaaay certainly, the most delicious and healthy muffin experiment here yet.

And what better day to share it on that Mother's Day, (in Canada), as my dear and wonderful mother happens to love trying out new and healthy recipes, so this one is in her honor and HAPPY MOTHER'S DAY, Maman!

 I guess I'll call them, "Coco-nana Muffin Tops", (coined by P), as using shallow tins like this one amounts to basically everyone getting the pleasure of the top each time.

Preheat oven to 175 C.

1 cup oat flour
1 cup quick oats
1/3 ground flax seeds
1/3 cup coconut shredded
1 tsp baking soda
1 egg white  
****3 tbsps EVOO
1 1/2 cup of milk of choice, (spelt this time)
Stevia or likely ~ 3/4 cup honey
2 ripe bananas, mushed

Blend separately, the wet and dry ingredients, then mix the wet and dry and spoon into shallow non-stick muffin tins.

Bake for about 25 minutes.

(Makes 12 wee muffins but would but would be even easier in a shallow baking dish.)

Mmmmmm:  I just envisioned this as a layer cake with mushed super ripe banana between, drizzled in perhaps some sweetened/lemony Greek yogurt.

Or, for those healthy-shmealthy-ers, with a sweetened filly layer drizzled with melted dark chocolaaaaaaaaate.



****INTERESTING NOTE: The above pic is of the first batch--the one I made forgetfully without oil, but they still turned out mouth-huggingly moist and so damned good we ate the whole tin, for supper, basically.

All that to say, feel free to skip the oil if you're watching your calories, or if you just don't believe me.  ;)

I won't even talk about the second batch, (which had crushed walnuts and just a micro-pinch of sea salt as well); may they rest in peace.

So, that's my latest low fat/sugar/cholesterol/sodium fiber-rich, healthy and yet still, #%!*&@!'n yummo muffin offering.

Bon ap,


Thursday, May 7, 2015

The Electric Cherry Acid Test

Hi, All,

Well, today is the day.  The day I had my (amongst many other things), serum uric acid levels checked, which I'm hoping hard will reveal lower than before levels--which have been too high for too long, IMNSHO. 

I'm keener than usual to see these results as for a month and a half now, I have been eating 20-25 whole cherries, (frozen), a day after reading some studies on how cherries/juice can reduce serum uric acid levels, as well as improve the symptoms of gout.

I thankfully do not have any gout symptoms but am more than keen to lower the uric acid due to its connection to future adverse cardiac events.

Mine has been pretty high since starting the early menopause, (chemo-induced), which is apparently, fairly common for us dames when we make the change.

For those of us with kidney damage, we are already in a risky group for heart problems; I have read and heard from more than one doctor that most kidney patients die of congestive heart failure long before reaching the dialysis stage.

All the more reason to do all I can to stay the hell out of that demographic.  

Here is some of that uric acid-cardiac info from Stanford.

Here is a study on the cherry-gout connection.

This is a human study on cherry juice and uric acid levels.

An interesting rat study on hyperuricemic rats' uric acid levels, post cherry juice.

And one more rat study for the road.

I will have my results in one week so all digits crossed that my little plan works like I'm hoping it will.

If it doesn't, I will likely double the cherry intake and have it tested again a month later.

Barring that, perhaps a pure cherry juice infusion at the hospital?

I kid.

With that, I bid you all a fine day.



Monday, May 4, 2015

J's Choco-Wal-Flax-Oatmeal Mini-Muffins

Hello again, Readers,

I've been craving chocolate lately, but not wanting to give into the urge to snarf down *a bunch* of high-bad-fat Belgian heaven, coupled with enough pain to keep me in, as well as a weekend trip coming up soon for which I'll need some healthy and easy breakfast options, I came up with these chocolatey lil devils today.

No butter, no sugar, no white flour, no salt, no yokes and even so, it was a challenge not to enjoy them into extinction.

J's Choco-Wal-Flax-Oatmeal Mini-Muffins

1/2 cup of ground flax seeds
1 cup oat flour  
1/2 cup quick oats  
1/3 cup cocoa powder 1 tsp baking soda Stevia, (dose depending on your type)
-or 1/2-2/3 cup of honey, (Acacia would be great with its delicate flavor)
1 egg white, (or whole egg for those not watching the lipids)
1/3 cup olive oil, EV
~1 cup of spelt milk, (or whatever "milk" you dig)
1/2 cup walnut halves, crushed

Blend all the dry ingredients and whisk the wet, then mix both together and drop into muffin tins, (~2tbsp per cup), and bake in a preheated oven at ~190C, (375F) for 25-30 minutes.

All ingredients organic when possible.

Makes 9 muffins.

Due to my going pretty light on the Stevia, I shmanged more than a few down with some lovely lemon-mandarin marmalade.

Chocolate craving, satisfied.

bon ap,


Monday, April 20, 2015

Teriyaki Tofu & Bulgur

G'Day, Readers,

Sharing today, a nice and easy lunch/supper idea, good for both vegans and non.

I know that most people do not get excited about tofu, but its lean protein power cannot be ignored, nor it's practicality and as with so many things, "it's all about the sauce".

Here's a sunny shot of it before it went down well with a tiiiiiny glass of Belgian beer blanche for moi:

Teriyaki Tofu & Bulgur

200 grams of soft organic tofu, cubed
1 med. onion, chopped
3 cloves of garlic, crushed and set for a spell
1 large red pepper
1 good nub of fresh ginger, chopped finely
1 cup of bulgur wheat
2-3 tbsp's of EVOO
1-2 tbsp's dark sesame oil
a splash of organic ACV, (apple cider vinagar)
~3 tbsp's organic teriyaki marinade, (marinades have way less sodium than sauces.)

All ingredients organic when possible.

Boil the bulgur and while that's cooking, sautee the onion, pepper, ginger and garlic, then add the rest of the ingredients and push around a med-fire pan until all is nice and hot, adding the dark sesame oil just before plating.

Topped with some chives.

Serves two.

That's it, et bon ap.

RENAL DIETERS: This dish is moderate in potassium, low in phosphorus, sodium and fats.
Nutritiondata.com is a good resource for checking nutrient levels in depth.


: J

Friday, April 3, 2015

Multiple Woots

Hello again,  :)

I'm glad I always carry tissues.

I couldn't help but get to leaking upon reading this last batch of regularly scheduled blood test results this morning, just outside the lab, avec-Lab.

These ones were for the usual kidney, CBC, 'lytes, etc. and all ((except for the beans)), are NORMAL.  Some barely so, but still, normal.  WOOOT! #1

Even though the kidney tests are all of course, far from normal, I gotta share that the GFR, (beans' filtration rate), is now up to a magnificent 42!  I do believe that is the highest it has ever been.   BEAN!  ;)  WOOOOOT! #2

And here's what poked me in the tear-ducts:

The ANCA (the type of antibodies related to the disease), titer, (meaning a dilution), is but ONE AWAY FROM BEING NEGATIVE!!!  WOOOOOOT! #3

When titers come out positive, (even on the cusp like mine is), they test further, to see what types of proteins the sample's comprised of.  In my case (P-ANCA), they test for MP0, (myeloperoxidase) and PR3 (proteinase 3) levels.

'Nuff medi-jargon, already.

What I really want to share with vous, is that my levels are negative and so damned low, they're practically ZERO!  

'K, one of 'em, but still--I believe that's theeeee lowest they have EVER been and there's yet another WOOOOOT!

Above is a snap of them, in all their marvelous mini-glory. (Norms on the right.)

Another recent sweet step: yesterday, for the first time in over two years, I actually walked our dog a good 3+km's, after FIVE PM!  And with NO painkillers involved.

I am most greedily savoring some deeeelicious progress pie ova he'eee.

Sure, I still lose mass-chi in the afternoons and the daily thoracic pain is ongoing and I creak around like a lil granny in the evenings--and sure, I'm often zonked out by 8pm but dammit, Jims, things are really, notably changing.

Just in time with the Spring.

It's a slow and narrow, pot-holed road, this #%*^+$~ MPA, but after a while, it becomes paved in more and more places and I'm looking forward to burning some serious rubber, (in the morning, likely ; ), on ever lengthening strips of blacktop.

Like a lil red Barchetta.

Though, I'd prefer a horse, actually.


: J

Thursday, March 19, 2015

The Silent "u" in "HRT"

Hello again, All,

Here's the rundown of what's been going on here over the last week or so:

After more than 6 months of being given a prescription for the HRT patch, (hormone treatment for menopause--which came early for me thanks to chemo), I decided to go against my inner voice and finally give it a try.

This decision was not made lightly, nor based on the endless hot flushes nor moodiness but on consistantly high, (often double), serum uric acid levels for well over a year now.

High uric acid levels are not only a gout concern, but can lead to adverse cardiac events as well.

After reading of some research pointing to hormone therapy lowering uric acid levels, I finally bit the HRT bullet and gave it a try, in patch form, the type that's worn continuously.

Here are a couple of links to said studies for those interested:



As some of you know, I am no stranger to headaches and migraines, so when I had a migraine early Saturday morning after putting on the first HRT patch on Friday, I considered it just another migraine bummer to deal with and took a zolmiptriptan, which took it down to tolerable and the day went on in decently veiled pain.

The following Friday, when it was time for a new patch, I was hit by another migraine within 15 hours of patch application--just like the week before but much harsher pain.

That second migraine did not respond to one dose of the triptan and the pain quickly escalated, leaving me wretching and soon balled up on the couch shivering and squirming and groaning under the unbelievable mounting pain.

It was the most severe, incredible migraine I had ever had in my life.  And that's really sayin' suMm.  It was like the usual vice from hell on the skull, but with an added high-E guitar string being pierced into all areas of the brain--the unfathomable pain moved quickly and fiercely and I was so scared.

When immense pain like that happens, one cannot help but think it's due to something in there rupturing/exploding--something deadly.

Enough time passed for me to take a 2nd dose of the migraine med (directions say to wait 2 (torturous) hours between doses), and that finally took the pain down significantly, leaving me a wracked, limp noodle for the rest of the day.

That HRT patch was of course removed during that mega-migraine episode and I've not used them since.

So that was Saturday.

Then on early Sunday morning, I woke with another migraine--which thankfully responded to only one dose of the triptan and that day was spent very low key as I was so very drained, physically and mentally.

Forward to Monday and ANOTHER migraine came, in the wee morning hours again and thankfully, that one responded (enough), to another zolmitriptan.

I was beginning to note some cognitive issues, (mistyping words, stammering over words I couldn't find, light headed-ness and weaker than usual with light nausea too, which I shared all of this with the medical team.

I was resting post-migraine on the couch Monday morning when my Nephrologist called and he told me to go to the ER immediately.

For those who don't know, this rare form of Vasculitis I have, MPA, likes to attack not only kidneys and lungs, but head tissues and sometimes even the brain.

Considering I already have damage in my R eye socket, sinuses and nostrils, I proceeded to pack up for a possible hospital stay and off I went, scared and already feeling the trembling effects of my sub-functional adrenal glands failing to help me deal with this new stress.  

Ten+ hours in the ER included a physical exam/blood draws, an EKG, CT scan and eventually, a brain MRI, (no contrast dye), all so thankfully NORMAL.

Due to these last few strange days, I will be spending the next month or so getting more tests done and then seeing a neurologist.  My neck will Dopplered and ultrasounded and my heart will be checked out further, (though I don't know why, if the physical exam and the EKG were normal).

I'm glad to have this chronically owy neck of mine looked into finally as my headaches and migraines usually stem from that area.

I'm hoping it's all connected to disc degeneration between C3 & C7 and/or a reverse-angle in the vertebrae  due to an "8 seconds" type of horse accident back in '95 when I was thrown and landed hard on the back of my neck.  Being in Japan at the time with no health ins., (ahhh the folly of youth), I never had it looked at, only x-rayed some years ago when the migraines were increasing again, which showed the degeneration and mal-angle.

So yes, let this be a painful lesson to any women out there who usually have migraines and are thinking about HRT/HuRT.  For me at least, it proved to be a helluva pain catalyst.  And it also caused uterus and cervix pain.

But it worked great on the hot flushes!  *eyeball roll*

RE: the high uric acid levels, since reading of the power of cherries to lower uric acid, I'm now eating about 30/day, in hopes that they'll do some kind of trick.

Happy to report that since yesterday afternoon-ish, my chi levels have increased and the headpain has decreased.  Guess those hormones are almost all rinsed out.

Now, time for some yoga-ish yoinging about on the mat methinks.

Bon, healthy vibes, Everyone,


Wednesday, March 18, 2015

J's Blueberry Almond Oat Squares/Cookies

Hello Readers and Bakers,

Soooo, after a few damned hard days of multiple, monstrous migraines that lead up to a 10+ hour stint in the ER this week, I was in dire need of some comfort food.  (I'll likely be blabbing about that adventure soon.) 

Craving something sweet, crispy 'n chewy (and of course healthy), I soon found myself getting busy in the kitchen with theeeese little lovlies:

J's Blueberry Almond Oat Squares/Cookies

2 cups of old fashioned oats
1/2 cup of oat milk
1/2 berry juice
1 egg
a big shake of cinnamon
Stevia to sweeten
1/4 cup of crushed almonds
1/4 cup raisins
1/2 cup blueberries
1 tbsp of olive oil
4 tbsp ground flax seeds
1/4 cup of 0% yogurt

All ingredients eyeballed and organic when possible.

First I preheated the oven to 200C then stirred up the egg, juice, oat milk and yogurt, then combined all ingredients and poured it into a non-stick baking tin and waited 20 minutes.

Yields about 12 small cookies or squares.

As our baking tin is a tad warped, the concoction was thinner at one end, resulting in the above crispy and most satisfying cookie-like treats.

Here is the chewier, thicker section--equally satisfying and both enjoyed still warm.

Couldn't even wait to make a decaf to go with and so good I don't even want a coffee now.

Beats the hell out of buying some packaged "healthy" cookie or power bar and I must confess, I have already eaten almost half of the tray.

Dangerous time of day to be messing with baking, 5pm is.

(I flipped the remaining thick section over and am re-baking them into crispy goodness now.)

Anywho, had to share with those of you like-minded healthy foodies out there.

As usual, bon ap & +++vibes,

: J

Wednesday, March 4, 2015

TumerEGGano Pasta

G'Day, All,

Sharing the latest fad in lunching over here.

It was created in a pretty nerdy way, basing the dish itself on two spices that I've been reading about lately and how good they are for our health, oregano and turmeric.

This coincided with a huge pasta-craving, so I boiled some whole wheat Farfalle.

I've also, (for the first time in my life and wow), been having to eat more calories lately, which is darned agreeable, I must say.

About half an hour before hand, I mashed up one clove of garlic.  Something usually I do way before lunch nowadays, but it was a busy morning--and one that included a sizable blood draw so yeah, I was pretty peckish.  ;)

While the pasta boiled, I fried in a bit of EVOO, one whole egg plus a white and then set it aside, covered.

Drained the pasta and added the fried egg up side down and combined with: (rough estimates)

1 tsp+ oregano
1 tsp+ turmeric
1 tsp + minced dried onion
1 tbsp ACV
2 tbsp EVOO
1 tbs of organic flax seed oil
the smashed clove of garlic
black pepper
2.5 tbsp of grated grana padano, (or parm)

That was real hard to take that pic, (hiiiii, Tony), the ole mouth just grabbing at that bowl, but I did it--'cause I believe in this pasta.  ;)

Because this is made with my daily sodium allotment considered, healthy people will probably wanna add either some salt or more cheese. ***Renal dieters: depending on your serum levels, note to sub white pasta and use less parm.***

Every time I eat this dish I'm surprised by how well the turmeric complements the rest of the more Italian ingredients.

Looks perdy too.

It's screaming for some kinda green garnish.

So boom, an easy and healthy lunch idea for those days when minimal #%#*around-ery is wanted.  (With a side of veggies, or a salad, of courrrrse. ; )

Bon ap et +++vibes,


Tuesday, February 17, 2015


G'Day, Readers,

Yesterday I was brought to sweet, sad, wonderful tears by an older gentleman whom I do not know, but had talked with once, for only a of couple minutes, about 8 years ago.  It was while out walking my dog Tony through a neighborhood we hadn't gone through before and on that walk, we passed by a huge and lovely Newfoundland dog named RAHHHRRR, as I learned from his owner who was outside at the time. 


Here, for those not familiar with the breed, is a pretty good pic of how I remember Rahhhrrr:

His impressive nose was as big as a golf ball and he had such a darling spirit that just beamed out of every tuft of fur on his massive body.

From that day on, I would make sure to walk down that street now and then in hopes of catching even a glimpse of that ole Big Foot, but it never worked out, partially due to my forgetting which house it was--only remembering that fantastic, massive hunk-a-chunk of big-dog-love.

I realize now, I never even petted the Raaahhhrrr-issimo.  It's so great how some dogs, like people, can make SUCH deep and lasting first impressions.

Recently, while walking Tony down that very same street, I was hit with the memory of RAHHHRR quite authoritatively and I stopped in my tracks in front of what turned out to be, the right house.

And at that moment,  I saw the owner rounding the corner from the back yard and I, "excuse'd me", as he neared the gate.  I asked if he was indeed, the owner of big ole Rahhhrrr, guessing that by now, he had likely given up the pooch-ghost.

He had, only last year in fact and that lovely man most serenely teared up as he told me of Rahhhrrr's passing.  I was happy to learn that Rahhhrrr had lived a proper-long life, (long for giant breeds), and that the man now had two more dogs, (albeit more the size of Rahhhrrr's breakfast than Rahhhrrr ;).  He got them from a sick relative who could no longer take care of them properly and I was glad to know that he had more dogoodness in his life.

To watch those fish bowl tears roll so freely down the man's rosy cheeks as he recounted Rahhhrrr's last days was just touching beyond words, but I wanted to give words a shot anyway here 'cause pure love like that always deserves a spotlight.

Now that ole Tony is officially starting to show his Labby age, (limping often, sleeping even more and lagging behind on most walks),  I guess I'm even more sensitive to the too-short life-cycle of the blessed creatures that make such a difference in so many people's lives.

Here's to YOU, RAHHHRRR!  

Glad you had such a quality steward.

 +++ (and still teary), vibes,

; J

Monday, February 16, 2015

Outta the Hole!

Hello again, Readers 'n Friends,

Today's post is one of major celebration and might best be done numbered due to so MANY positive happenings lately, so here goes:

1. Since this last decrease in prednisone, (Jan 31), I am now OFFICIALLY outta the scary-hell zone of what for me, is that inundating, (both physically and emotionally), adjustment process.

Yes, Friday actually, was the first day I did NOT have that late-morning vacuuming of all physical strength, which for me is always a part of tapering until my adrenals begin to deal with the new lower dose.  (This happens whether or not I have had a mid-morning snack, for those thinking it's low-blood sugar related plus, it never happens unless I'm weaning.)

Those authoritative drainings-of-the-chi-pool always literally take me down--most unfortunate if they happen when in public, transforming me into what looks to any passers-by, like I'm fighting fainting.  My movements become slow-moton, hands on the knees or "lying on walls", grasping whatever is near or worse, down and balled up with my head in my knees until it passes enough for me to be able to ever so slowly ease gently on down the road again.

More than once, total strangers have come to my side to try to help in these shituations and bless them all.

For those curious, I can liken it somewhat to how one feels when they come out of anesthesia, (but the brain remains fully functional), or somewhat like the feeling of having just fainted and trying to walk too soon after--through molasses.

It is really something.

I won't be doing THAT again for at least SIX MONTHS and I cannot express how overjoyed I am about that!  My rheumy-prof and my Neph both agreed that my staying at the low dose of 2.5 mgs of prednisone a day for a while is OK.

I feel like I'm about to go on vacation!   :)

2. On Saturday, (Valentine's Day), P and I went out for lunch to celebrate it!  Sure, a tramadol was involved but I was UP to going out again, for the first time since weaning and we had a wonderful time together.

3. I haven't napped in three days now.  THREE!

4. Sunday also brought with it ANOTHER. (two in-a-row!), outing, in the form of visiting some old friends I hadn't seen since before the hospital--almost three years ago.  And it was lovely. 

5. Had my blood work done on Friday and my GFR is UP!  Now back at 41 glorious points.

6. I no longer need to do urine testing every single month, now only every three months and yay.

7. All of this this adds up to my quite likely within a month, being back in the out-of-house voice-over recording saddle again!  Only in the mornings, but BACK dammit, BACK.

This fab weekend of firsts was all wrapped up in breaks of beautiful sunshine, (when the forecast had called for rain the whole time), framing perfectly, all of this new and inspiring progress.

Still can't believe it has been two very bumpy, unbelievable years, a mind-melting time frame, still.

I close this with heart-felt high-fives to all of you out there whom I've gotten to know and so appreciate since creating this blog.

May we all feel better and better, (and keep up the healthy-eating/living that leads to it ;).


: J

Saturday, January 24, 2015

For Sophia Loren

E mille grazie,  bella donna, for the rich inspiration.

I saw a fantastic film montage of this magical creature this week and I just could not help myself from giving it a go with the ole pencil, using one of her earlier photos, which lead to Photoshop for the finish.

After two years, (and whoa, hard to believe it's been that long since that life-changing day in the ER), I'm more than happy to be literally, back at the drawing board, so I'm sharing the fruits of yesterday's labors with you all here.

And with any luck, with Sophia Loren as well.  

Pleased to share too that this work was all done without painkillers.

Lil by lil, Juan day at-a-time, taking back the meadow...


: J

Saturday, January 17, 2015

It Pays Off

Greetings once more, Readers,  

Writing today to share a lil progress and with it, smiles.

It comes in the form of some blood test results I recently got back that for the first time in a lonnnnng time, are all normal or nice and close to it!

Since this heavy treatment commenced in January 2013, my cholesterol readings have been far from stellar but little by little, day by healthy-eating day, along with taking less and less prednisone, I have managed bring those levels down (the triglycerides in particular--which got up to twice the norm at some point), and they are all now ,(mostly) below the maximums and I'm just pleased as punch.

(The GFR, btw, is still holding at 37.)

Here's a pic of the cholesterol goodness:

Even though it's in French, the gist for fellow blood test readers is pretty darned swell. 

<--("inf a", = French for "less than".)

And moreso for a person at stage 3b CKD who is not on Statins--if I do type so myself.  ;)

Avoiding the addition of that particular med to my already full enough pill-plate will always be a goal and results like these only spur me on to continue controlling closely, all sources of saturated fats, (be them animal or plant-based), and cholesterol.

It also further fuels my daily inclusion of foods like ground flax seeds in my morning oat-berry mueslix and my defaulting to EVOO for all cooking, as well as my renewed romance with nuts and seeds of all kinds, (in moderation, of course).

Today, I will celebrate this progress with my dear P with a lunch date at one of our favo Italian restos.  I haven't been to a restaurant since my birthday in July '14, so this is gonna be a big deal for me.

(And they most pleasantly cook salt-free if asked, too.) 

I shall be taking a pain killer to fully enjoy it all, which hopefully includes a crispy wintery stroll apres.

So voilahhhh, hoping this serves as encouragement for anyone else with CKD wanting like hell to avoid needing to go on even more medications, especially statins.

take good care of your good selves out there,

: J

Thursday, January 15, 2015

Calorie-free/Carb-free, Potato/Diabetes

G'Day, Readers,

Today's topic is carbs in sugar-free sweeteners and how "calorie free" does not always equate to, "carb-free".

For those with Diabetes or for people who are on high dose/long term prednisone, (which can cause Diabetes if one's sugar intake is not tightly controlled), this is a very important thing to be aware of.

I discovered this danger first hand, (literally, via finger-prick-test), when I was still hospitalized back in Jan '13 as there, one's only non-sugar choice for sweetening the breakfast "cafe" is aspartame.  And of course, due to treatment, sugar was not an option for me.

Being an anti-fan of aspartame, I asked P to bring with him from home some Truvia, thinking I was doing my body a huge favor, buying into the "Stevia" talk all over the package.

After less than a week of adding less than a teaspoon to my cuppa hospital joe, my insulin levels had spiked dangerously high.  I can't recall the number now but it was enough for the nurse to gasp loudly, something most nurses refrain from doing when taking such readings.

That day while making his rounds, one of the Neph's and I were chatting and I showed him, (feeling oh so pleased with my self), the Truvia package, which he took one quick look at and with the hairiest of eyeballs, pointed out to me the carb content.


Per 100 grams? 99 were carbohydrates and there, was the smoking insulin-gun.

Here is a pic I took of some at the market yesterday:
Many sugar-free sweeteners sing the praises of their calorie-free products but fail miserably to also note on those front panels the carb content, which for many sweetener types, is quite high due to all of the other ingredients they add to bulk it up so it's spoon-able.

Splenda, too (succralose), is another one that's very low calorie but certainly NOT low-carb. at almost 90 carbs per 100grams of product.

To put things in perspective, plain white sugar has 100 carbs per 100 grams.

Like in the case of Truvia, (the one they sell in France anyway), stating that a product is, "made from Stevia" when in fact it contains only trace amounts of it, is more than misleading to healthy customers and downright dangerous to folks with serious medical conditions. 

This is why we must always read labels like hawks.

I wanted to spread the word on this for any new patients to Vasculitis experiencing remission-induction treatment, which always contains a  high dosage of prednisone taken over an extended period.

One would think hospitals would include any and all info like this upon releasing a patient starting on a long-term immune-suppression treatment but alas, many do not, so let's hope this lil post shines a light on things for those needing it.

And for the record, now that I am on only 3 mgs of prednisone/day, I am back to enjoying beautiful honey in my coffee, using just a smidgeon of Stevia to bring it up to sweetness perfection.

Wishing you all +++vibes,

: J

Wednesday, January 14, 2015

Faux-Creme Farfalle with Tuna

Hi, All,

Sharing another satisfying and healthy lunch idea, which is still weighing nicely in the ole belly.

As usual, this dish was the result of my just working with what I had on hand, combined with being significantly hungry and craving some comfort food.

Feeling able to honk-out on a big meal again is a welcome change, as for too long now, I've been dealing with stomach issues that have resulted in more weight lost.

Liking the fun of gaining some back.

I was so hungry I didn't even garnish it for the pic, nor add more pepper as is the tradition.

Some gator-sized bites were savored. 

So here's what went into it:

1 1/2 cups of whole wheat pasta, (any shape you fancy, again, better white for the CKD crowd)
1 tbsp of low-fat Philly, (a good lo-sodium choice too)
3 tbsps of 0% fat fromage blanc, (but yogurt would sub fine)
1 tbsp of flax seed oil
2 tbsp of EVOO, (extra virgin olive oil)
1-2 tbsp apple cider vinegar
2 tbsp of grated parmesan cheese, (better to keep it at  1 for the CKD'er's)
1 huuuuuuge clove of garlic, pressed, (Done a half hour before using.)
1/2 can of no-salt-added albacore tuna, (but salmon would rock too)

Fresh ground pepper to taste. 

Boil up the pasta, (no salt in the water), drain well and add everything, (off the burner), starting with the Philly, folding gently until it's all mixed and enjoy.

Serves one.   Organic ingredients used whenever possible.

Fast, easy, healthy (served with a salad/veggies, wink-wink), and it rather fixes the Jones-ing for some creamy goodness while staying sensible--sodium/saturated fat and cholesterol-wise.

Bon ap and bon vibes,

: J