Wednesday, July 23, 2014

Out 'n About!

And it had been one lonnnnnng time since.

G'Day, Readers,  

If the practice of blogging has taught me anything, it's simply to record the good things.  Immortalize them and celebrate them even.  That may sound corny to some, but after long periods of dealing with daily pain that rather lays one out, the everyday things I did yesterday were most certainly not taken for granted.

So today, I'm going to share with you all the first blog-note-to-self made yesterday, which was: enjoying theeee hell out of lunch OUT together with P at an Italian joint we once frequented and for my birthday, too!

They were extremely accommodating there and I had my whole meal prepared without salt. 

And I loved it.

Man, have ye ollllle taste buds changed.

Here's a pic P snapped of the mmm-ing of my succulent swordfish in a creamy sauce with fettuccine.

Granted, I added about a tablespoon of fresh parmesan but still, it was to me, an immense and strangely bittersweet pleasure, the whole affair. 

We shared a half bottle of very ripe and velvety and fabulous Calabrian vino with the meal as well.

And the decaf espresso after was truly superb.   ;)

Even had a bite of P's Tiramisu.

I still can't believe it had been more than TWO YEARS since we'd been to that place.

Two. Years. 

A lot has indeed happened in that time frame.

I am so glad to be out there in the world, enjoying it again, lil by lil.

That said, the prednisone weaning from the present 5 to a greatly anticipated 0 mgs is about to recommence on August 1st, so I'd BETTER be writing down the good things to review well later when that oh-too familiar pain sets in for weeks following each taper.)  BUT that's OK, 'cause I have Tramadol now and more mojo than ever so I am ready.   ;)

I'll only be tapering by one mg per month, (to avoid possible adrenal crisis or another MPA flare).  If all goes well, I'll be off that stuff, fiiiiiiiiinally, by the start of 2015. 

Or a bit later--if tapering requires dropping only .5mgs/mo, which is commonly done for those last few gnarly mgs.  All digits crossed for a smooth landing back into fully functioning adrenal gland land. 

Now, back to my lovely birthday with P, 'cause there's more:

We even took the subway to get to the resto.  That was my first time in the train system again in--yup, more than two years.

And after cabbing it home, we shared some wonderful watermelon--which is very kidney-friendly, by the way.

Helluva day of firsts, I'd say and yes, it was a Tramadol-day.

(The more feedback I get from those who have used it long term, the less concerned I am about potential problems at my very low dose, coupled with taking days off regularly.)

So, that's all, folks.  Plenty, I'd say, and with many a smiley shout-out to all the friends and fam who sent in sweet birthday messages, mmmwwahhhhhh!

+++vibes,

: J

Thursday, July 17, 2014

Squirming and Worming

Hi, All,

Writing today to share some good news from J's pain management dept.  (Said pain being still, some nasty thoracic daily aching from about 1pm on.)

Due to an allergy, codeine-based pain killers are not tolerated well by moi, (I turn into an itching machine), and of course, due to the renal disease, NSAID's are off limits.  Even aspirin, I've been directed to avoid by my Nephrologist.

This leaves few other non-narcotic options.

(For those of you wondering, medical marijuana is not yet approved in France for Vasculitis.  Though recently, it has been approved for the treatment of MS pain, which is a good start.)

Upon being released from the hospital back in Jan '13, I was prescribed Tramadol, (a synthetic opioid), and that too caused some major itch-fests at doses of both 100 and 50 mgs but recently, I tried a lower dosage, mixed with paracetamol and lo' and behold--IT WORKED!  Only 37.5mgs of Tramadol per pill and that one wee dose, combined with paracetamol works for a good 5 hours--and I itch only a little!

It so thankfully takes that burning pain down enough notches to keep me from needing to get horizontal and/or turning me into a chair-squirmer and I cannot express how blown away I was this past weekend in Brussels with glorious relief.

On the train ride back to Paris on Sunday evening, I teared up with joy, realizing deeply, that for the first time in a very long time, I had just experienced two near-NORMAL days pain-wise.  TWO!

<--Had to take a pic of what I was looking at when the happy drops fell.   :)

I had no naps while there either, driving home just how fatiguing enduring seemingly endless pain is.  Pain you always hope will be better the next day, but it never is and with that hellish loop comes frustration and, (as I sadly learned this past year), often after just too much of that, depression.

Living with MPA, Kidney Disease and the many treatments and side-effects therein, makes it extra-crucial to keep one's mojo in full working order and being less of a slave to pain makes that a whole lot easier.

Knowing I have these precious pills at my disposal is just gold and to ensure they continue to work well each time I am electing to not take them daily.

I have read that they are very addictive and that dependance comes easily too, so for both of these reasons, I will be sure to leave days between days of use.  Another plus is that of the addiction accounts I've read about, none were at low doses like 37.5mgs/day.

Also in my googlings on Tramadol, ('cause I always research the hell out of anything new going into the ole tank), I came across this interesting study comparing my mix of tramadol+paracetamol with higher doses of Tramadol only.  All here for the curious.

Ehhhhh voila, that's it for moi, for now.

+++vibes,

: J

Thursday, July 3, 2014

Healthy & Simple Crepe Recipe

Hello again, All,

And even moreso, to the healthy eaters/fellow CKD patient crowd today, as I just finished shmangin' down a very satisfying lunch and wanted to share.  I've been rather into crepes lately but just as into finding ways to make them as healthy and CKD-friendly as possible.

Today's kitchenings yielded this, (click to enlarge):












The crepe/flatbread (as it's a tad thicker than an actual crepe), itself scores high due to various pluses like:

-ease
-minimal prep time
-no cholesterol, (for those of us keeping a lid on that)
-low-sodium (good for the heart-healthy crowd as well)
-low potassium

So for many of us, kidney patients in particular, these are all very good things.

Here's the recipe:

1 cup of flour, (I used multi-grain this time, which I added some quick oats to as well, but I have had success using buckwheat, of course white and semi-complet, (60% whole wheat in English, I think), also.

1 cup of water, (plus a few table spoons to add once blended to make it as runny and thusly crepey-thin as you like).

1 egg white, I was tres curious to see how it would turn out sans-yoke and it's nice to know I'll never need yokes in crepes again.

Whisk away and pour onto a hot, lightly oiled, big and flat pan, being sure to tip it in all directions to get the batter to spread out as much as possible.  (I used a few drops of organic light sesame oil this time.)

Serves 2.

I filled mine today with said garlicy free range scrambled eggs, (one whole, one white), some slightly steamed arugula, (to both shrink it and take a bit of the personality out), a modest spreading of light "Philly" type cheese, (called "St Moret", here in France).  Plus a few drops of lemon juice with fresh ground pepper and I admit it, probably 20 small grains of sea salt.  Like 1/4 of a normal pinch, I'd say.

As you can see, the crepe browned and puffed up almost Nan-like and it was so good I just went at it like a big ole taco.

Gonna add the garlic to the batter next time and experiment with herbs and spices too.

Will work of course as a meal or fruited-up good in a dessert.  Or with chocolate sauce.  Or...  ;)

Bon ap et +++vibes,

: J