Tuesday, December 31, 2013

2014, Bring it ON!

For me, this past year has given a whole new meaning to the phrase, Happy NEW Year.

To say '13 was a mofo would be an understatement.  It was darned near Dr. Housey at times and one I will never forget, (will I forgive it?).  ; )

I went from being hospitalized for acute renal failure, to being told my kidneys have permanent, considerble damage, to learning that because of this I had hypertension and would for life, to finding out I was anemic, would have to undergo chemotherapy, all tagged later in the year with a couple memorable rounds of kidney stone badminton, to now, due to the long term use of prednisone, enduring the wiles of adrenal insufficiency while still weaning down off of the magical stuff.

Is that it?  Criiiiikey, no, as I'm not even noting the cause of all this strangeness, which is of course, the rare form of Vasculitis I have--10 in a million-rare, as I've read.  The Vasculitis has been munchin' away at me for many years, in many different ways and chose my kidneys for its grande finale in January last year.

So glad THAT show didn't go on and I raise my morning decaf to second opinions, as without seeking one, I most likely would not be here typing about it all.

Treating acute flares of serious diseases like this require very heavy drugs.  One of them being prednisone, and at very high doses, for long periods to shut down that murderous auto-immune beast.  Drugs like these hold in their healing and hellish hands, a bevy of often very harmful side effects.

One biggy, for example, is the risk of becoming diabetic whilst on high dose/long term prednisone.   Even the smallest amounts of sugar can send a person off that way and I am gladissimo that my shunning of sugar entirely has saved me from having to deal with another potential serious medical condition.

Then there's the Cytoxan, the chemotherapy drug--used in lower doses to treat certain auto-immune conditions.  THAT stuff had some wild side effects.  I know that if I'd have had more than 7 cycles of it, I'd of gone completely grey, as toward the end there, the "silver lining" of hairs were increasing quickly--unless they were falling out--which for me and my formidable Latino hair quality and quantity, was actually kinda nice.  Plus it also went rather copper-ish, a shade I used to color it and the white hairs blended quite well with those new reds, (my inner coiffure, "TreVOR", is always paying attention ; ).  That said, I'll stick with Ms. Clairol for coloring, should I want to go copper again.

Thankfully only one time, after the 5th chemo infusion I think, did I end up violently ill after, for a good 12 hours too--wretching up bile regularly and with a migraine that rendered me fetal and in tears.  (The migraine meds didn't touch that one.)

There were of course, other side effects but I have a feeling that this post will be a long one, so we'll just leave it at that.

On the upside, I lost all underarm odor while one the chemo--and for 5 months following it too.  That was interesting, convenient, disturbing. 

So much is now behind me.

And I'm not even touching on the deep well that was the emotional struggling at times when on that crazy cocktail of loathful, life-saving drug technology.

I must say, it got pretty dark for a spell there and perhaps rightly so.  Perhaps anyone would have snapped some after 8+ months of guaranteed daily pain.

The prednisone weaning process, for me at least, has proven most authoritatively to be painful, pure and simple.  It's as if every day, after about one or two pm, most of the bigger joints are being pulled apart or the whole spine is burning constantly at a low flame.

Then there's the "creeping skin" feeling--like when you have the flu, the biting headaches that ebb and flow and the star of the pred-weaning-show, the deep, knifing, repeating stabs of pain that happen anywhere on the body, at any time.  The kind that make you yelp  out and straighten up like a board when they hit.

Perhaps the joint pain is worse for me due to the deterioration I have--the blame of which I am placing squarely on the shoulders MPA beast.  I believe it was causing inflammation and destruction of the wee vessels in those areas for many years and the connective tissues were eventually starved.  That is my theory anyway, as I'm missing a lumbar disc, have deterioration in many cervical discs and also have a good start on osteoarthritis in my knees too.

All that to say that eventually, the negotiating of that bumpy, potholed, unbelievable road left me pretty broken, only compounded by the timezone problem of my being here in France, when all the ones I want to talk with are in Canada.  And when they are awake for me to call, I'm almost always either curled in pain up under a blanket or out cold from the face-punch-fatigue.

But 2013 is almost over now and on THIS distinguished day, the last day of one HELLUVA year, I look back on it all and say,

HAAAAAAA!
I know I'm not even close to the end of this long treatment process but still:

HA-HAAAAAAAAAAAAH!!!

This feeling of knowing just how far I come, (only truly known by my dear P, who has seen almost all of it--from ambulances to 'roid rage and bless him harrrrd), is truly HA-HAAAAH-worthy. 

Being proud and even stronger now in body and spirit, will make this last wean down--at least from my brain's viewpoint--the easiest one to date.  Sure, it might be the most painful but hey, it'll be the LAST of that horrid process for a long time and THAT is music to my whole body.

At the steady dose of 5 mgs of prednisone/day, (where I'll remain at for a year+), I hope like hell to do a lot less falling asleep at tables and a lot more setting of them for the suppers.  And being back doing voice-overs in town again will surely do wonders for the ole mojo too, can't wait!

Yesssss, a MUCH more perpendicular 2014 is highly in order, methinks.

So on that note, thanks for keeping track of me and I wish all of you reading this your best year yet.

May we spend our precious time in 2014 doing more of what we dig, with the souls we love, leaving wakes of smiles as we go.

+++++2014+++++,

: J

Friday, December 20, 2013

What IS IT About a Fire?

In the hearth, that is...  ; )

Hello again, All,

I'm sitting beside a toasty one as I type this and if there's anything that is actually a pacifier, it's for me at least, a fire.

Sitting in front of it, tending it, breathing life into it if it wanes, poking at it, standing to warm my butt and then rotating la ham to feel deeply that glorious heat, ('cause with kidney disease, comes the constant chills); it's truly one of my favorite things about winter and so I wanted to blog about its power.

No music on, save for the gentle snores of ole Tony in his basket and the gurglings of the radiators, the water tinkling its way through the pipes--it all makes for one serious shot of good mojo.  REAL GOOD.

I like to watch the thoughts just kinda float by, over the flames and coals, through that lovely scent of smokey wood. 

Gets me a little nostalgic at times too, recalling days gone by and the many sweet memories I have of so many wonderful souls who have touched my life over the years.

Some have shed their mortal coils and I miss them so still but many, are still making every day count on this belle blue and green ball and it's to all of you that I raise my wee glass of chablis.

Yes, I'm having a wee glass of chablis as dammit, I made one deeeelicious lunch yet again and sometimes, a dish just YELLS for an accompanying, proper glass.  FTR, the lunch was kamut fettuccine, chick peas, onions and garlic all sauteed up with olive oil and topped with a lil parmesan for the win.  Food of the gods and when yer a starvin' marvin--of their gods too.  ;)

So voila, after a pretty productive morning here of dog-walking, errands, housely duties and cooking, I am now parked in full-on Indian Chief-mode with my darling fire, where I shall remain until the daily fatigue takes me down again without my own opinion, to that heavy land of deeeeeep Z's.

So stay warm all, (or cool, depending on your hemisphere), and here's to us all taking some time out in silence and peace as this, (for me anywho), helluva a year draws to its end...

++++vibes and bonne holiday wishes to you All,

: J

Saturday, December 14, 2013

The Sweet Wee Things...

WOWISSIMO:

Today I managed, what at this point in my treatment, is nothing short of a feat!

Not only did I cook up one hella scrumptious lunch of fat little fabulous sauteed scallops, (something I haven't treated myself to in many moons, a sodium splurge, I know), red peppers and Basmati for myself and P, but I ate all, (and with a wee beer too!), WITHOUT having to lie down after!  Add to that already blissfully normal thing, I topped it all off with even doing the dishes too!

Yes, dear Readers, I haven't done such a regular-person type o' thing since before being hospitalized last January.

That's a lonnnnnng-ass time.

Long enough to merit taking good note, as it's oh so important to celebrate these precious pieces of progress.

To think that such things were once an everyday occurrence, taken for granted and now, something truly worth blogging home about. 

Too bad I didn't get a pic of this yummo feast but alas, I was hungry like the wolf while cooking and the plating was therefore none too artistic.

In place of a foody pic, I offer the above serene morning scene I captured today at the frosty entrance of my favo park to walk Tony in.  The weather this winter so far has been fantastic.

Today's giant steps, (for me ; ),  are thanks in no small way I'm sure, to my choosing and my Neph giving me the green light, to NOT wean down by another painful milligram of Prednisone for the month of December.  I wanted me a peaceful, ache-free and way less fatigued Christmas, dammit.  The best prezzy I can think of giving myself--ability.

So voila, HAD to share this wee slice o' joy from Juan Land today.

Wishing you all a nice weekend with the ones you love...

+++vibes,

: J


Wednesday, November 27, 2013

Napa Cabbage Lentil Rice

Season's Greetings, Readers,

Posting today with a tasty and as always, healthy recipe that I threw together for luncheon today.

Napa Cabbage Lentil Rice
1/3 of a Napa Cabbage, (aka Chinese cabbage), sliced
3 cloves of garlic, minced, (And as usual, set aside for 20 minutes before cooking to maximize the allicin.)
1 cup of cooked wild/long grain rice mix, (or whatever rice you fancy, of course)
1/2 cup of cooked lentils, (I used brown/organic)
1 tbsp of sesame oil
1 shy teaspoon of oyster sauce
juice of 1/2 lemon
LOTS of fresh ground pepper

I first chop up the garlic and cabbage, then set the rice a-cookin', through the cabbage in a wok with a bit of water, close the lid and wait a bit.

Once the cabbage has relaxed and the rice is cooked I throw all ingredients into the wok and toss.  This way, the garlic is not tooooo cooked as I rather dig the punch of it raw.

That's it, perhaps 15 minutes of actual cooking and ohhh so satisfying in this chilly wintery weather.

bon ap and bon vibes,

: J


Tuesday, November 26, 2013

A Bright Idearrr...

Hello again, Readers,

Writing to share a possible life-saver which dawned on me today while walking the pooch.

I realized that yikes, I NEVER have my wallet (which contains my medical alert card), with me when out for our daily hikes.

And since I have yet to get myself a medi-alert bracelet, if anything were to happen during those jaunts, it would be made extremely dangerous without any kind of alert item on me.

So I got busy in photoshop and made a bright and bold medi-alert jpg listing all of my conditions and medications.

This image is now on the lock screen of my cel phone--the ONE thing I never leave home without.

What's great too is that as my meds change, which they seem to often, I can update accordingly.  A win-win.

Just wanted to share the idea with anyone else out there new to the chronically ill game like me.

 +++vibes,

: J

Saturday, November 2, 2013

Movin' On Up!

Hello again, Readers,

Hoe the weekend is going well out there.

Mine is going pretty well due to:

a) Postponing my Prednisone wean down to Monday so I could enjoy the weekend with P proper.

&

b)  My latest blood and urine work ups have all MARKEDLY IMPROVED since last month's!!!

The electrolytes are all still in normal ranges, the hemoglobin is holding fast at 12.2 g/dl and the red blood cell count in the urine--which last month was a whopping 32.000/mL, (normal being less than 5.000), is now LESS THAN 1.000!

And now for the tastiest morsel on the kidney health platter:

My kidney filtration rate, aka GFR, is once again, a fantastic and faaaabulous 40!!!

Here's a pic of my blood chemistry report as of October 30th, for the scientificy peeps out there, complete with a verrrrry smiley face to show just how mine was when I opened the envelope today.

That red blood cell count, (aka RBC), in the urine also confirms, (along with how much BETTER I'm feeling), that the renal colic/kidney stones that hammered me last month, has officially HIT THE ROAD!

It's so NICE to see the numbers trending like this and it all just spurs me on even more to continue my scientific eating for LIFE.  A life that I hope will never have to endure any dialysis nor a transplant if I can help it.

Wishing you all a healthy, happy day out there!

+++vibes,

: J


Monday, October 28, 2013

"Give us this Day"

Our daily salt-less, butter-less, whole grain with honey home made bread...

Yes folks at home, we finally got our bread machine, (a Panasonic SD2501), that's just too easy to use and yesterday I made my very first loaf.

Here's a pic P snapped of the lil guy, still warm:
I as usual, tweaked the recipe some and I couldn't be happier with the results; a cloud-like interior and a perfectly chewy and delightful crust.

Here in France, if you want saltless bread or baguette, your only choice is white, real white and as I'm trying to make everything I put in my mouth as healthful as possible, well, that just wasn't cutting it any longer.

I shall now share the recipe for anyone out there interested in making one of these lil darlings.

I call it "Tuscan", as in that area of Italy, one is hard-pressed to find any bread made with salt.  That's thanks to a pope back in the 1500's who slapped a huge tax on salt and instead of paying it, the Tuscans just ran with it and started making all their bread sans-salt. 

Juan's Tuscan Whole Grain Bread

1 tbsp of active yeast
500 grams of whole wheat flour, (this one had some nice seeds in it too)
1 tbsp of Acacia honey, (blended with the luke warm water first)
2 tbsp of EV olive oil
370ml H20

Into the bread machine goes first the yeast, topped with the flour,  followed by all the wet ingredients.  Press ye ole start button and wait.

Gonna have me a nice thick slice with a lil Philly Light and organic scrambled eggs 'n sauteed garlic for lunch, methinks.  Mmmmmmm...

Have a sweet day, All, et bon ap!

+++vibes,

: J

Tuesday, October 15, 2013

A "Private" Stoning

Hello again, Readers,

Poppin' in to share with you all that I'm finally outta the tunnel--which I thought I was out of last week but nay, the cat came back, even scratchier and meaner.

And by cat I mean MAJOR flank pain, abdominal aching, loss of appetite and generally just feeling like poo in and out for two weeks.

Twice, (strangely both times on Saturdays), I came close to checking myself back into the hospital and then happily, I'd be on the upswing again the next day.

Yesterday, after sending my Neph a pic I took in the loo.  Yes, a pee pic.  He surmized that likely, I had been going though Renal Colic aka kidney stone(s).  He also said that as I was feeling so much better that I had likely "evacuated" it.

I love medical terms.  "Everybody!!! Get the HELL ouuuuuuuut!!!"

And I certainly AM feeling much more average again.

So delightfully average in fact, (for these days), that this morning, I hoofed it a few good km's to and from a housewares store to buy not one but THREE new cushions for the couch.

I must admit the joints were not happy with me half way home, but I pushed on and it was great to do something normal after being so down for the count since Canada.  (Also due to a mofo sciatica attack that is also finally fini.)

I've been reading up on kidney stones some today and wasn't overly keen to note that once a person has one episode, it's likely to happen again.

And I already follow such a renal-friendly diet too.

Perhaps being on all this high dose calcium and/or the D3 for so long have taken their tolls?

As far as I know, stones don't run the family.

Ahhhhhh, the roller coaster that is this MPA-->CKD bastard...

In any case, I have officially upped my water intake and surely the resumed pooch walks will help.  I missed walking with Ole Yeller, ('cause he's deaf and rather loud at times and yes, yellow too... ; ).

as always, +++vibes 'n take good care o' yer beans,

; J

Thursday, October 3, 2013

Tests you can't study for...

Hi, once more, dear Readers,

I know it's been quite a spell since I posted anything but that has been largely due to my being rather offline for the month of September due to traveling to not only the South of France, but more recently, to my precious Canada in the Rocky Mountains.

Here's a snap of the view just a short hike from my folks' doorstep, SUPA-NATCH!

Just before leaving for Canada in mid-Sept. I had an appointment with my Nephrologist who noted my creaky and pained movements, (the app was a late afternoon one, and I was in my usual wean down Prednisone state), and so he ordered for me a bone density scan as Prednisone, (among other possible horrid side effects), can lead to osteoporosis, due to calcium leaching.

This as one could imagine, kinda put a back-of-the-mind wet blanket on the whole trip what with the simmering worry about it and that if I had it, how I'd handle the meds commonly used to treat it--which are NOT kidney-friendly.

So yesterday, I had the scan done and MUCH TO MY UTTER JOY, the results were totally normal!  Sure I may have major joint pains daily but they are so wonderfully NOT from osteoporosis!

HAD to share that with you all here.

Also wanted to share how the two week trip to Canada actually went, for anyone out there in a similar medical boat wanting to travel but at the same time, wary of the stress of it all.

In a nutshell, it all went much better than I had anticipated.  And yes, I wore a mask for the duration of both trans-Atlantic flights which I was extra-glad for doing, as sitting right behind us was a very loud whooping-type cougher who darned near puked after each attack.  And she by the sounds of it all wasn't even covering her sputtering mouth.  Ewwwww....

To make these travels easier and after running it by my doc, I decided not to wean down from Prednisone that month to minimize the pains and fatigue and simply give me more chi to be able to enjoy myself with so many missed friends and family members.

It all went off without a hitch too.  K, with a couple of evenings that were rather hard, which I chalked up to jetlag and simple travel stress and I bounced back the next day each time.

And just BEING with so many nears and dears whom I have missed sooooo much over this past challenging, cloistered year was medicine in and of itself, I'm sure.  Not to mention that fresh, clean and wonderful mountain air.  Here's another shot I took on a different hike out with P in that paradise:

In other news of the dietary variety, due to my Neph trippling my ACE-inhibitors, (as they not only lower blood pressure, but aid in kidney filtration), I will soon find out if this will translate into even more retention of potassium in the ole blood stream.

Hoping HARD that it won't as that would mean my having to, (and just after getting those foods back in rotation), start to further limit high-k sources like: beans, chick peas, nuts, dark leafy greens, etc.

Hoping too that it won't steal even more of my voice on a near daily basis either.  Still not sure about all that as it's not every day and not always the same hoarseness.

To be sure, my Neph has prescribed a trip to an ear/nose/throat specialist, who will hopefully be able to iron that out.  It might just be allergies, though I've never had any and the hoarseness came on when I started taking those BP meds so--we'll seeee...

So voila, a long over due post that will hopefully inspire fellow paranoid MPA-er's and other immuno-suppressed people to travel if they so choose.

Tomorrow I'll have my monthly blood and urine test results back to see just how the upping of BP meds has affected my potassium levels.  And how my waning lymphocytes are doing too.

Now, time for another lie down on my brand new, nice and large heating pad that arrived the very day I returned home from Canada.   Yay.

Have a sweet day, All,

: J

Tuesday, September 10, 2013

A Bunch of Good News!

Hello again, dear Readers,

After a week at the glorious Cote d'Azur with my dear P and family too, I wanted to check in with some nice news from the lab yesterday.

But first, here's a shot I snapped at our villa with its own private pool.  You can see that the weather was just plain perrrrrrrfect:

So just to recap, I've been on a Prednisone weaning schedule, decreasing by 1mg/month since reaching the 10 mg mark.

To say it's been hard is an understatement and so as this month is one of traveling I decided to NOT wean for the month of September and remain at 8 mgs/day until the next scheduled wean down to 7 mgs in October.

The GREAT news is that since not weaning I haven't had one nap!  K, well, perhaps a couple 1 or 2 minute micro-naps but no more 2 hour bangers.

This in my new world is a very big deal as heavy fatigue and pain after 1 or 2 pm has unfortunately been the status quo since March, (when I weaned from 40 to 30 mgs/day), and for a while I was starting to wonder if it was all just the "new normal" of Stage 3 Kidney Disease, as I've read many a story about how tired people get in stages 3-5.  But alas, I'm thinking that a lot of that suffering was due more to the weaning than the CKD and THAT, is a good thing.

Not only have I not napped since not weaning, but the pain has decreased somewhat too.  Sure I still have fire up the spine daily after about 2pm, the odd waxing and waning headaches and other joint pains but to NOT be so drained that I just flop over is for me, some very welcomed and renewed hope for the future. 

So voila, there's good news #1.

Good news #2 is that after getting my blood and urine workups back this week I was most pleased to see that my Potassium levels are STILL within normal ranges and that's after eating even MORE beans and nuts and spinach and even quinoa as well as other significant sources of K last month.  FANTASTIC!   I must of course continue to be vigilant about all that goes down the gorge, but it's just grand to know that my body is handling the increased potassium and getting protein from plant sources more than fish/seafood/eggs, (which got me into cholesterol-trouble for a while there).

Good news #3 is that I am now officially NOT anemic anymore!  I had been since hospitalization and likely before that for some time too and it's wonderful to see that number as normal again for the first time in so very long.

Good news #4?  My kidney filtration rate, (aka "GFR"), is holding steady at 40.  Granted, it did go down by one point since the last blood test but still, a huge improvement from where it was after being released from the hospital back in January.  This also shows--I'm guessing, that the MPA is still solidly in remission and no longer nibbling on my beans like it had been all throughout chemo until remission was finally reached.

So there it all is and all after a MOST relaxing but too short getaway to the beautiful South of France.  Our villa was gorgeous, the pool was cleaned 3 times during our one week stay, the town was charming as can be and I am already missing that turquoise jewel of a pool and dining on fresh swordfish we would pick up at the market.  K, I just GOTTA add a pic of the first luncheon I made with that melt-in-your-mouth, delish fish:

MAN ALIVE, I swear it was the best lunch I ever made!

The green stuff is sauteed arugula with garlic tossed in the pan the fish was cooked in.  With Linguini, of course. 

Now I'm off to walk this ole Yeller of mine here under some most welcome bluebird skies.  Autumn is already taking hold over here and I love the changing smell in the air.

Thanks again for reading and be well, everybody.




+++vibes,

: J

Tuesday, August 13, 2013

Good Ole Home Remedies

Hello again, Juan Day Readers,

Today's blog post is regarding a wart.  Yes, a darned, lowly wart, which I discovered on my pinky toe about a month ago and will blame on the Chemo, or the Rituximab, or both, heheh...

When I first saw it there I thought, oh-oh, here we go, an onslaught of warts are surely to come, given me and my suppressed immune system, so I asked P to hit the pharm and get the latest 'n greatest anti-wart treatment, which was a home freezing kit that looked pretty promising.

Before trying it though, (as is the tradition ; ), I googled home remedies for wart removal and came across one that took my fancy due to its non-intrusive nature. The home freezing method would have quite possibly caused an infection during the healing process--again, due to the immuno-suppression, so I was less than keen to jump to it.

The method?  Duct tape.  Yup, good ollllle duct tape.  What you do is place a small piece on the wart and then cover with a band-aid, (keeps it in place in high summer heat, I found), occasionally, gently filing the wart down, re-tape it and keep at that for two weeks.

The result?  Well, I'll just show ya's as I was MORE than impressed with this painless, passive and perfect method--that took yes, exactly two weeks.

Here's the pinky toe now, completely wart-free with only a shallow crater and brand new skin on the spot the wart once occupied:
What's inspiring about this little story is that my immune system responded exactly the way a healthy one would via this treatment--which apparently helps the body locate the virus to drive it outta Dodge.

The duct tape works also by depriving the wart of oxygen, which all viruses need to survive.

So boom, there it is and toe-life is good again.

Hope it'll work too for anyone out there with a wart situation, as opposed to freezing, or for more pesky cases, utterly painful injections of anti-Cancer meds right into the warts.  I have a friend, (who is also on immunosuppressing drugs), who had that done on multiple warts and said it was probably the most pain she's ever had to endure--and this lady's a trooper, too.

And with that, I bid you all a lovely August day out there.

+++vibes,

: J


Saturday, August 3, 2013

Movin' on Up AGAIN!!!

Hello again, dear Readers,

Today is a very special day for a couple of reasons and they're both so sweet I don't know which one to share first!

Let's start with these lil kidney beans o' mine.  As of the latest blood work done, I am now the official owner of a brand new and markedly improved kidney filtration rate, (aka GFR), which has gone from 34 last month to a smokin' 41!!!

I'm still in Stage 3b of Chronic Kidney Disease, but alas, no longer "barely in there", like it has been for soooo long.  I'm smiling still and have been since picking up the results an hour ago, teeheeeeeeee!

Now, onto the 2nd bit of great news, and that is in regards to my electrolytes and my potassium levels in particular.  After a month of eating a number of "no-no's", on the Renal diet, (IE: beans, chickpeas, dark leafy greens like spinach, a few cherry tomatoes and even ALMONDS, (which was an UBER-treat after not having any for 7+ months and a staple in my former life), I was beside myself with joy to see that my K-count was STILL TOTALLY NORMAL!!!

This means that those fat little fava beans I bought, (currently soaking and soon to be cooked into Nirvana), will not only be enjoyed but celebrated, as I can continue to eat more damned normally!

What's extra great is that since I'm now vegetarian, I no longer have to worry about getting my much needed protein, (as I must limit fish and whole eggs due to cholesterol), from potassium-rich pulses and oh-so missed almonds and walnuts too.

Granted, all in calculated doses of course, counting every nut and never going too crazy on the portions with the beans etc., but WOW, this all means so much to me as with all the restrictions in my diet, this new loosening of the potassium-belt is just beyond welcome.

Can't wait to share this new GFR with my dear nephrologist cousin in Milano, he will be pleased!

I'm guessing that during all the time I was getting chemo, the Vasculitis was continuing to vie for position in my body and was, even though suppressed, still nibbling away at my kidneys. Now that I'm solidly in blessed remission from that disease and have been since late June, these sweet lil beans are now free to profit from everything I do to help them.  That's my theory anyway.

And on that note, IT'S LUNCH TIIIIIME!!!  On the menu: gorgeous white beans with a little white rice, garlic, spices and PLENTY of yummo arugula.

As always, ++++vibes and thanks for reading,

: J


Saturday, July 27, 2013

Cabbage & Noodles

Hello again, Readers 'n Munchers,

This post is to share last night's most satisfying Renal-friendly supper with P and a dish I'll surely be making again soon.

Here's a snap of P's plate, (with a much higher pasta-to-cabbage ration than mine had):

It's a pretty simple dish, though I added a twist that made it even more savory, cooking the cabbage in some spiced up bean broth I kept from the other day.

Here's what went into it:

Linguini, (or any pasta or noodle you fancy)
White cabbage, chopped
Raw garlic, (added in the dish at the end)
3 wee diced sun-dried tomatoes

Toss it all together on the burner with a splash of EV olive oil for a bit before serving and voilah.   Garnish with chives or whatever fresh herb you may have handy.

P of course added some Parmesan to his plate, ("as is the tradition" ; ), and no doubt it was tasty but I didn't and loved it anyway.  There's nothing quite like the regal, almost creaminess of real good olive oil.

This idea was inspired by a dear friend o' mine, Carrie who shared it on FB the other day, but as she's not a vegetarian, hers was with diced bacon accents and I do believe egg noodles instead of Linguini so, thanks again for the inspiration, ma belle!

Bon app & bon vibes,

: J

Monday, July 22, 2013

A Brand New Year!

Good Day, Readers, 

Just a wee post to share how my birthday started this morning at 7am.

I had just taken my morning meds when I heard that oh so familiar sound that all pooch owners know, just outside the bedroom door.  That wretching horrid, deep-gorge groinking that our beloved canine friends make when, "something" is stuck in their throats.  Usually, it's a whole lotta noise for nothing and all is resolved quickly.

Not this morning.

Not only did I get out of bed to find not one sizable and runny blob of brown questionability, but TWO of 'em and it didn't take more than a second for me to realize that the brown was yes, folks at home, you guessed it, POOOOOOOOOO!

AHHHHHHH!!!
Thank the stars it was not on the carpet in the bedroom or I surely woulda lost my cookies/meds trying to clean that up/off/out, oiiiiiii!  I came VERY close, but I got a grip and did not.

Here's a pic taken not minutes ago of the ole sock, looking rather pancakey on the tiles, keepin' cooooool and takin' 'er nice 'n easy.  Even post-poo-puke, he's still a dangerously cute bastard.

So I quickly went downstairs to grab the old dust pan, (long ago converted to T's puke-picker-upper), and got it all cleaned up in a New York minute.

Thaaaaaaaaaaaanks Tony!  Yer da best!  ; D

The ole boy bounced right back after barfing and so we did our usual morning 5k's together without a hick-up, heheh.  I only HOPE that this new snack idea does NOT become a habit for the ole Hoover here.

Aaaaanywho, aside from that shit, (heheh), the day so far has been LOVELY with tons of sweet emails and FB messages and forum posts comin' in from the world over.  The sun is blasting, I got some nummy white beans on the boil with bay leaf, (from our own tree), garlic, cumin, pepper, paprika and a wee bit of sea salt and the celebrating will commence with luncheon!  Haven't had white beans in, erm, I really don't know how long, for sure since last year and I'm SO LOOKIN' forward.  It's another potassium-envelope-push as white beans are VERY high in K.

Not sure what I'll be up for tonight, but I sure do hope to be awake to witness the full moon on my very own b-day, a helluva prezzy for Mama Nature!

To all, be well, be happy and bisous, (said, "bee zoos" and it means smooches in French),

: J


Friday, July 19, 2013

Dip Sticks, Tomatoes & Professors

G'Day, Dear Readers,

So I had another visit with the ever-charming Professor the other day and it went very well.  Firstly, because he reassured me that two ongoing problems I've been dealing with for some months now are NOT neuropathy-based.  That was a major load off and here's to them both resolving themselves soon, (right wrist and left achilles tendon).  He said to keep bracing the wrist @ night and stretching the calves regularly--and, of course--more time.

This ANCA-type of Vasculitis I have can lead to certain, (sometimes even permanent), forms of neuropathy; two of which are known as, "drop wrist" and, "drop foot". I am so glad that it's just good ole repetitive use injury stuff.

And in the more good news/wheewww! dept, today I got some blood work back that is now showing normal Leukocyte, (white blood cell), levels.  This is very good news as the last time they were taken, just before the 2nd Rituximab cycle,  they were rather elevated and at a time when those levels should be anything but out of range--usually a sign of infection.

So YES: as of yesterday, those numbers are back to where they are supposed to be and I'm a-likin'!
 
I was kinda concerned as I still have the weirdest tickle in my throat no doubt from these BP meds, (it's been there since I started taking them months ago, "dry cough" being a reported side effect.), but with those high leukocytes, I was getting concerned about a potential lung thing going on.

Maaaaais Non!


And today, my Nephrologist called and complemented me on my kidney filtration rate. Well thank you, sir!   Sounds like a weird come-on line from a dyslexic universe, "Are you filtering with me?", heheh... 

He also e'd me my blood work-up from the hospital last time and I'm HAPPY to report that both my Sodium AND Potassium levels--after eating plenty more K-rich healthy foods lately--are both TRES NORMAL!

This means I can eat MORE pulses.  Next on the list, white beans.  Miss 'em like crazy.  Perhaps even a few slices of--GULP!-- cherry tomatoes with 'em!??!   One of the big no-no foods on the Renal Diet and so GOOD with beans, and a lil Parmesan and...   I'm getting hungry again.

Funny, 'cause I bought some new and cute little white beans this morning, throwing K-caution to the wind. 

Oh, and my LDL cholesterol levels are better than ever, now totally normal.  :)  The triglycerides are still riding high, but alas, I'm learning that this is not a shocker for those with CKD.  Being on the pill can also raise those levels, I've read.

Aaanywho, it's been a good day with lots looking under the ole hood and liking what's there and I wanted to share it with you all.

More good vibes comin' atachya's,

: J

Wednesday, July 17, 2013

Just Bees 'n Thangs and Flowazzz


Hello again, Readers,

So I realized this morning while slowly waking up, that since the hospital in January, I've gone from taking 9 meds a day plus regular chemo, to now taking only 6, (and one of those is birth control, which if not sick I might be on anyway, and the other is Calcium/D3 so it doesn't "count" as it's a vitamin. ; ).  I'm also taking the new maintenance drug, Rituximab and from now on, it's only one infusion every 5 1/2 months.  Yummmm.

Two of the above turfed meds were for blood pressure and I'm so glad to have gotten those outta the loop.  I quite hated being on THREE different kinds of BP meds after a life of never having high blood pressure--aside from just before the crash.

These decreasing meds, coupled with my now lower than ever daily dose of Prednisone, (now at only 9mgs, down from 60 in January), all adds up to a smile 'n here I am bloggin' about it.

Liking too that even though I was prescribed some interesting pain killers called Acupan, (can't take codeine nor NSAIDS), I haven't taken any in months, preferring now to manage the joint pain with heating pads or massage and/or simply lying down, (as it's often the back), all sans more drugs.

And no doubt, eating real clean/vegetarian/low sodium/0-sugars/low-protein/Renal), plus walking nice and briskly 4-5k's/day with ole Tony here has done nothing but good for the ole ticker and to help these bombarded cells of mine recover.  (I just had two IV cycles of Rituximab within the last two weeks.) 

That and just takin' it easy when it's simply the most prudent thing to do.  That's a hard one to get the noodle around, this constant re-realizing that the things I was once did without a second thought, I now must break up into chunks and spread out over days. 

On that takin' 'er easy note: here's a pic I snapped today while sitting outside in the gorgeous sunshine watching Tony eat certain blades of grass.  I rather like how my latest shade of polish matches the lavender.
And on the subject of nail polish, Iiiiii purchased it yesterday, in a STORE!  That was the first time since last year that I've been to, "the mall", here and so I had to write about it.  ; )  I rather dug being just another normal person takin' care o' bidni...   

Yup, things, bit by bit are a-changing and I'm so glad for it all.   Nice how it's all starting to feel a lil better right around birthday time too.  Helluva gift, I say 'n thanks!

On that note, on with the rest of the day here.

Be well, All +++vibes,

: J

Tuesday, July 9, 2013

Scientific Salad 10: Mediterranean Popeye

Hello again, Readers,  

Just popping in with another healthy meal-salad idea.

This one is in celebration of after only a month of strict low-cholesterol eating,  my latest dips sticks show that my LDL is NOW NORMAL AGAIN!

The HDL is still nice and normal too and even though the triglycerides are still riding a lil high, as is the total cholesterol count, I'm just delighted with the decrease in LDL--and from healthy eating alone.  Pretty good for a sick puppy too, I might add.

Oh and my Vitamin D levels have returned to normal which is sweet.

So, here's the salad with all that went into its loveliness.

Everything organic when possible and raw, except the scrambled eggwhites:

1/2 cup o' chickpeas, (soaked, cooked, no salt)
2 egg whites,
1 tbsp of ground flax seeds
2 cloves of minced garlic, (set for 20 mins)
1 cup o' raw spinach
1 diced red pepper
a few sprigs o' fresh mint, chopped
a good squish of lemon juice
1 tbsp of EV olive oil
1 tbsp of apple cider vinegar
fresh ground pepper

I swear, my jaw muscles are better than ever with all this crunching goin' on 'round here.

Now I'm off to the market for more fresh produce and other delights.

A great day to all and as usual, +++vibes,

: J

Thursday, July 4, 2013

A Life in a Day

Hello again, dear Juan Day Readers,

Yesterday, P remarked on how I seem to live an entire life each day, waking with vigor, walking the river, smiling and laughing and all systems go--but by the evenings, I am more like a crippled old woman, and thanks to these BP meds, even my voice becomes weak and scratchy and far from it's usual velvety self.

So I wrote a poem about it.

Haven't written any poetry or lyrics since before being hospitalized and it was good to get it out and hear the muses again.

Hoping hard that this now regular routine will soon enough, become the exception.   But after so many months of feeling so rough, it's hard to imagine that happening, as I still don't know if the fatigue and pain is due to this lonnnnng and ongoing prednisone weaning, (won't reach my goal of 5mgs/day until November), the stage 3b kidney disease, or the damage done to my joints by the Vasculitis over the years.

In any case, like I said to my dad the other day on the phone, I am SO grateful for the normalcy of the mornings.  If I felt like I do in the afternoons all the time, I really wonder if my morale would be anywhere near where it is.  "Vive les mornings!!!"

So here it is, hot off the JG presses and done on one of the wonderful, (and sunny too!), good days:

A Life in a Day
by Juanita Grande 

I wake up a child, each day with new life
To anyone watching, I'm normal and right
Past lunch time the change starts, burns into my eyes
The clock surely trades all that vigor for strife

By three I'm much older, than what my years are
I walk slowly and painfully, never too far
Usually to or from my bed, the couch or a car
And with each passing hour, I lower the bar

But sometimes there's one day, erases the rest
I open the window of normalcy blessed
I get all of my things done--the pains off my chest
And these days are precious and fill up my head

To anyone watching on these days, I'm "right"
But most days are shadows of my former life
This road is a long one, with each step I fight
And little by little, I gather more light

+++vibes, Everybody,

: J

Wednesday, July 3, 2013

Arugula Bliss

Hello Again, dear Readers, 

Just a quick pop-in today to share today's MOST satisfying lunchy idea, which I found VERY hard to photograph being crazy hungry due to a later than usual dog walk, (and we didn't get rained on!), but I managed a decent shot--and ole yellow Tony helped.  ; )

In keeping with my, "expanding the potassium/planty/low cholesterol options", regime, I have recently added back one of my FAVORITE greens, the adorable Arugula, (aka Rocket lettuce), in all it's peppery, stingy glory.

Back before the kidney disease, I would eat a whole bag of this stuff often for lunch, but now it's only half a bag, (and half the potassium, yay), with less parmesan, different vinegar, (used to use balsamic), and due to this cholesterol mystery, sauteed egg whites mixed in for the lean protein win.

So here the recipe, nice 'n easy, the way I likey:
All tossed with verve in a big bow to serve one:

60 grams of arugula
1 clove of garlic, pressed in and raw
1 tablespoon of EV olive oil
1/2 tablespoon of organic apple cider vinegar
3 organic egg whites with a lil Mrs Dash
1 teaspoon of parmesan, finely grated.
a few turns of fresh ground pepper

And BOOM, there lunch is!

Can't wait to try this with kale in Canada this Fall.

And hey, if I wasn't watching so much of what I eat, that would be with the full 125 gram pouch of arugula, one whole egg plus the two whites and more parmesan but I'll leave that up to you healthy people out there to enjoy for me.

Bon ap et bon vibes,

: J

Tuesday, July 2, 2013

The Simple Things

Hello again, dear Readers,

Just a lil pop in to share today's deeelish luncheon, tres simple and just as quick, (once your chickpeas are soaked, cooked and cooled the day before ; ).

I've been told by my Nephrologist recently that I can, "ease up on the diet restriction a little".  He said, "go out for dinner like--once a month.  Have a beer, like---once a week."  So looking forward to dinner out again!  Haven't done that since last year.  And to have another of my Belgian fav's again--a glorious brown Kasteel Beer?!?!  *gulllllp*  That would be heaven...

So for me, this "easing up", translates into my eating more and more potassium rich foods which are both healthy and not toooooo crazy in the cholesterol dept.  My levels are still, strangely, high and we haven't figured out why yet.  Could be a long term Prednisone side effect, could be the kidney disease itself and part of a "new normal" or, it could be genetic.  Never had high levels before, that much I know.

(And yes, yet another diet restriction, aaaayyyyyaiyaiiii...)

On that note, when I see my Professor Rhemy next, I shall request a "VAP Cholesterol", test, which is more in depth than the usual, showing what kinds of LDL's are floating around in the ole blood stream.  There are two types, apparently, A and B.  A, being the big fluffy good kind and B, being the hard, dense, dangerous kind.  All according to one's genes I've read, but managable via lifestyle and diet changes.  Anything to avoid the Statin-boogie, thankyouverymuch.

Interesting and telling statistic: 50% of all heart attack victims have/had normal cholesterol levels.

Now, back to my lunch...

There it is in the beautiful sunlight, before I snarfed it down in the sun room.

Here's what went into it:

-2 cloves of garlic, (chopped and let to sit for 20 mins. to get max benefit of the Allicin)
-some fresh, diced mint sprigs from the garden
-just over a half cup o' chickpeas, (not from a can)
-fresh lemon juice
-ground pepper
-extra-virgin olive oil

Et voila!  Simple, yummy and healthy.  


May the day find you all feelin' fine and as usual, +++vibes et bon ap,

: J

Thursday, June 27, 2013

Remission Possible

Hello again, Dear Readers,

Just had to share a few good things with you all, starting with how the new treatment IV session of Rituximab went at the hospital yesterday.

In a word:  GOOD.

There were a few reactions about 45 minutes into it including a slight fever, an ear, nose & throat blowout that went pretty strong for about an hour and then settled, but THAT WAS IT.

It was an 8 hour day at the H and I shall be back there for another course in two weeks.  I'm told by fellow Vascies, (people with Vasculitis ; ), who have had that treatment, that the 2nd round might be less reactive and that's just fine by me.

Then not another one for 5 1/2 months!  *yummmmm*

(I also now only have to get blood work done monthly.  : )

What was amazing after getting home and enjoying my usual post-hospital bubbly bath is, I DIDN'T have a nap!  And no naps at the H either.  Yes, Friends, I was blown away to see myself awake I think for the first time in many moons for a whole, (and lonnnnng) day that started at 6:45am, SANS-nap and relatively with it to boot. 

Granted, the hours between 9:30-ish and midnight were spent nesting with P, but still, I was really amazed that I stayed awake for so long after taking in so many heavy drugs that day.

I think part of that was pure relief and thankfulness that it all went well, as I know I for one was undeniably wary knowing of the drug's many serious possible side effects and reactions.

That and the 100 mgs of methylprednisone pumped into me before the Rituximab.

Now, to note how I am TODAY after this new drug.

In two words: NOT BAD! 

And by not bad, I mean:

-I slept last night from midnight to 5:45am, (garbage trucks came early), but the sleep itself was great.

-I went for my usual 4k pooch hike by the river this morning without a hick-up.

-And even though it's only noon, I'm feeling OH SO MUCH better than I did after chemo sessions, which would usually put me outta commission for 1-2 days.

On the subject of chemo and a little mystery that's been plaguing me since I noticed it some months ago--today, my armpits began to smell, (just a tad, but yay!), like armpits again!  I had lost all body odor in those pits o' mine for the longest time and until now, I didn't know if it was a side effect of the Prednisone, the daily antibiotics or the chemo and now I know.  It's that darned chemo.  It's been a month now since my final session and even my hair seems to be falling out less.  *like*

So there it is, a wee update with lots of good mojo for me to celebrate.

I'm so looking forward to feeling better and better and getting on the mic again for a number of new projects that have come my way with the best of timing.  I know, lil by lil, Juan day at a time 'n all, but YAY.

'Til next blog-time, be well All.

+++vibes,

"Remission Possible-J"



Thursday, June 20, 2013

THEEEEE Day Has Arrived!!!

My dear Friends, Family and Blog Readers, 

I write this post today with an incredible feeling of relief, wonder and deep happiness, for this is a post I have been waiting to write for 6 long, tough months and to actually be doing it is just surreal and here goes.

I, Juanita Grande, after all these drugs and chemo and eating uber-well, am now officially IN REMISSION from Microscopic Polyangiitis!!!

YES!  YES! YES!!!

It's TRUE and I still am whirling with the news that I discovered only yesterday when at the hospital for the signing of the drug trial papers for Rituximab.  The doc-in-charge who was briefing me on how the study will go just kinda casually mentioned while looking at my file on the screen that indeed, as of the last ANCA levels blood test done at the hospital, I AM FINALLY TESTING NEGATIVE!!!

Never thought negative could be such a positive word.  :)

And to learn of this heart-hugging, mind-melting, soul-blowing news on the last day of my dear parents' visit here in France, was just the cherry on the already unbelievably delicious cake!

When I got home and shared it with them we all hugged and cried and laughed together, basking joyously in this blessed news I have been soooo longing to hear for so lonnnng and wow.  Just wow.  I am still in some kinda shock!

Here's a photo I snapped while in the cab on the ride home as I drank in this great news:

Now begins the maintenance phase of this lonnnnnnnnnng treatment, which will commence on June 26th when I do another IV day in the hospital for my first infusion of Rituximab.

This will be followed, I believe, by another of the same 2 weeks later and then---NOTHING for the next 5 1/2 months!
Follow-up shots will go on every 6 months like that for 18 months and I will still be on Prednisone, (but only 5 mgs/day thankfully), for that time as well.

It will be immensely wonderful to have such a long break from all this medical activity and here's to this "liquid gold", medication being just what it takes to kick this form of Vasculitis I, (no longer!!!), have to the bench forEVER.

Of course, the kidney regime and further treatment for it, (in the form of the BP meds which also improve kidney filtration and yes, the new ones steal my voice too, it seems), will continue, as that's a whole other ball o' medical wax and I will keep up the good fight, eating right and staying fit for LIFE.

But for now, MORE CHAMPAGNE!!!  (Just a smiiiidge ; ), and even more light and hope and joy and thankfulness--all in time for summer!

And on that note, I shall spend this rainy and stormy day taking it slow and eeeeeasy as even though I'm starting to feel better these days at last, I'm plum worn out and at not even 9am, I'm already thinking about a nap, heheheh...

Be well, All and thanks again to everyone out there who's been keeping tabs and checking in on me during this whole affair.  It means A LOT.

++++++++++vibes,

: J

Saturday, June 1, 2013

I'm In!

Greetings dear Readers on this (finally!), sunny French Day,

Just a wee note to share that the great Professor/Dr. Guillevin, "top international authority on Vasculitis", has accepted me as a patient and I have an appointment for June 14th.

I'm really looking forward to meeting this man and learning more about Rituximab and all the new trials being done, using it both as aggressive treatment and for maintenance.

For those interested, here is a link to an interview with him on that very subject.

In other news, today I got some blood tests back and while most of it is great: my GFR, (kidney filtration rate), is up again at now, 36 (YAY!), and the hemoglobin is but half a point away from normal, (DOUBLE YAY!), my cholesterol however, is pretty darned high and me no like.

As it was myself who requested the cholesterol levels be checked, (to a different doc), I faxed the results to my Nephrologist along with some Q's, (of course), and hopefully this will be fixable with diet and not more damned pills.

Fingers crossed...

Perhaps it's just another effect of kidney disease and the lil beans just not being able to process saturated fats as well as they used to?

And regarding "The Voice", I've been on these new BP meds for 4 days now and so far--minimal hoarseness in the pipes!  (TRIPLE YAY!)   That loss of vocal presence was rather getting to me as it's amazing how much sounding like crap can affect one's morale.  It's still a lil scratchy at times, but not as bad as it was.

So boom, there it be 'n cheers for reading.

Have a sweet weekend, All.

+++vibes,

: J

Thursday, May 30, 2013

The Voice

 And no, not the show, heheh...

Hi again, Everyone!

Just a lil update now that I've bounced back some from the LAST chemo session.  I just love saying that.  THE LAST CHEMO SESSION.  YAY.  Bounced back enough to return to my daily pooch-power-walks today and it was great to be back out there in the fresh, sweet-smelling air.

RE: the title of this entry, I had a chance to talk with my Nephrologist when in the hospital last time and he prescribed a new blood pressure medication, as the one I was on was sporadically and most frustratingly stealing my voice--a dry cough being one of the side effects of said ACE inhibitor.

I'm now on an angiotensin II receptor blocker which also helps with kidney filtration and so far, (after a few decent BP readings taken since this morning), seems it's working fine.  Not sure how long it will take to reflect on the voice issue but I'm sure soon enough.  Hoping it will make future voice-over and singing work MUCH more do-able, literally.

Unfortunately, if I have my facts straight, this blocker, like the ACE inhibitor,  also causes one to retain potassium, so I'll have to continue being extra limiting with the K-rich foods.  (WHY MUST THEY ALL BE SOOOO GOOD!!? ; )

Since it's been so rainy and cloudy here lately, here's a pic of our first rosebud, on a day when the sun wasn't being so shy:

In other nice news, as some of you already know, MY DEAR MOM & DAD WILL SOON BE COMING FOR A VISIT FROM CANADA!  This is music to my ears and will no doubt be some wonderful and healing medicine. Won't be long now and I'm SO looking forward to it.

On the blood-front, tomorrow I will be going in for another test that will show, (after a week), my ANCA levels again, (these are the markers of MPA's activity in the body and the last time I had it done it was juuuuust on the cusp of being negative at 1:20).  I'm TRES curious to see how it is this time as I've had I believe, two chemo sessions since then.

On a side note, I learned at the hospital last time that when I arrived in crisis-mode there back in January, the reading was a staggering 1:800.  VERY different and no wonder I felt like death in a Glad bag back then.

I still have to have that testing fully explained to me, niiiiice and slowwwww-like and hopefully in the lamest of layman's terms.  I know it's a dilution process but that's about it.   If anyone reading is an expert, please do comment.

Soon, in less than three weeks, I will commence with the maintenance phase of this long treatment, consisting of Rituximab infusions.  This stuff has, as I've mentioned before been referred to by fellow MPA patients as, "liquid gold", and I soooo hope that it puts this disease firmly into lasting remission.

It's done in the same manner as the chemo, as a day patient via IV, along with some corticosteroids and a bunch of other prophylactic measures to minimize allergic reactions and I'm honestly still working on not being overly concerned about the side effects of the stuff.  It's the darned Cancerian in me I guess and I'm sure it'll all be fine and will work like the magic it's touted to be.

On that note, I'll be taking part in a Rituximab drug trial at my hospital and here's to that shedding even more light on this serious autoimmune disease.

Et voila, today's bit of bloggy blabbings.

Hoping it finds you all feeling fine and enjoying the day.

+++vibes,

: J



Sunday, May 19, 2013

The Jimi Hendrix of the Vasculitis World

Hello again, dear Juan Day Readers,

"What a difference a day makes".  K, well, a few days in my case here but as of today, a helluva turnaround in my outlook and I wanted to share some goodness that I just learned of after speaking with my Nephrologist, who just called me and ON A SUNDAY, ain't that grand?!?   What a guy...

He put my worried/over-researching mind at ease with answers to a bunch of Q's I had faxed him last week and it has really made a difference in the ole mojo-tank here.  THANKS, Dr. K.

Turns out, that the Rituximab treatment will consist of likely, (all depending on the results, of course), 3 courses; each one done much like the chemo, as a day patient.  The second will happen two weeks after the first and, (again, depending on results), 4 more infusions every 6 months or so after.

My fax had also requested that he write a letter of referral to a new Rheumy Pascal found last week, by the name of Dr. Loïc Guillevin, who as we read about, is a heavy in the world of Vasculitis.  

When I asked my doc if he knew him/know of him, his voice went up a couple notches and he quickly sung the praises of this apparently, "Top authority on Vasculitis in the WORLD."  

Well, holy COW and the barn too, and am I ever happy with the notion of being treated by someone who most defineitely knows his shite!  What's a huge bonus is that he most likely speaks English, being constantly involved with international conferences, studies and groups on the Vasculitis front.

All this to say that coupled with the bevy of beautiful and heart-warming emails and messages I've been getting from so many dear friends and family lately, I'm starting to feel so much lighter in my spiritual loafers again.

It's been a few dark days here but I'm back in the ring again and swingin'--when I'm not nappin'...  ; )

And on that note, it's time for luncheon and I'm hungry like the wolf as usual.  I'm thinkin': organic scrambled eggs with green onions 'n garlic on a slice of saltless bread--which I've gotten rather used to, I must say.

So, with renewed mojo and a happier heart, I wish you all a great Sunday and thanks again to everyone who reached out and showed me some much needed love at this time.  You guys ROCK.

+++vibes,

: J




Friday, May 17, 2013

The Ole Mojo is a No-Go...

Hello again, dear Readers,

So, I picked up my usual bi-monthly blood test results today and over all, it's pretty ok with all the electrolytes in normal ranges and the hemoglobin count--after only one week of iron supplementation up over one point, taking me to 10.9 and that's great.

What was less great was seeing my kidney filtration rate, (aka GFR), go from 35 to 33.  Also less than inspiring was noting the Creatinine at higher level, (not good), than last time.

I thought that this last round of chemo would have at LEAST given me a few points in the right direction with the GFR but non.

What's really taxing my mojo reserves though, is that due to the extended chemo rounds ordered by my doc, my plans to be in blessed Canada this July with P have been rain-checked.  Depending on this immune system of mine and how fast it recovers from the chemo, we *may* be able to make the trip in September but at this point and staying true to this blog's name, it's juan day at a time and I gotta roll with it all, hard as it is sometimes.

I sure could use a hug right now as I really can't express just how MUCH I was longing to be with my dear family again and my sorely missed Canuckian friends after already 6 months of this heavy treatment and rather isolated existence--now to be 8 months and with another 6 to follow of a new treatment regime.

As I understand it, this new treatment, called Rituximab, along with glucocorticoids, will happen after the last chemo session.  It will be given as a day patient, like chemo, in the hospital and frankly after reading about it, which you can do here, I'm scared.  The side effects and even risk of death and untreatable possible brain damage are enough to make me not want to even do it.  BUT, this treatment apparently reduces relapses of MPA from 30% to only 5% and that is promising.  And on the upside, Rituximab has been referred to as "liquid gold", by some fellow MPA patients I've come to know in a support group and I'll be pulling on their pantlegs about this too.

I need to dig a lil deeper on this stuff. 

And I need to stop crying already, although it IS probably good for lessening the sodium levels at least, plus I'm outta kleenex...

That's it for me today, gonna pet Tony now and have a hot bubbly bath after.  He's plum tuckered out after a long walk and some off-leash romping in the park with two young pooches.  It was a joy to see the ole Pappy running free.

bon weekend, All,

J.

Saturday, May 11, 2013

This juan goes out to...

Greetings, Readers,  

...the one I love, who has been taking SUCH good care of me in these hazy anemic days of late and I just wanna say THANK YOU, my dear Pascal!

He's been in that lil kitchen either loading or unloading the dishwasher, makin' snacks or full on suppers and what a treat it's been as he does a kidney-friendly special of mixed jullienne'd tri-color bell peppers, baked Tilapia with sesame oil 'n lemon 'n Basmati rice that I've been just diggin' into lately.
Seeing as by the evenings I'm usually a complete write-off, (and let's face it, from 2pm on, I'm either napping or trying hard to stay conscious), these P-dinners are an extra pleasure at the foggy end of the day.

Here he is just the other day, working his hubby-magic as I dozed from the sofa.

Happy to report that I'm now on day 3 of iron/b9 supplements, (which I always take with C to help with absorption), and on Monday when I do my usual bi-monthly blood tests, I shall see just how fast these things work.  Hoping fast enough to see even a little mounting of the hemoglobin count from last time, which was lower than ever.

Wishing all of you a sweet weekend with the ones you love and with a "grande" salut to all the hubbies out there who are taking extra-good care of their other halves who may need it right now.

+++vibes,

: J


Tuesday, May 7, 2013

A Slightly Longer Tunnel

Hello again, dear Readers,

It's been a while, eh?  I know, it's this damned anemia/prednisone weaning that are just knockin' me OUT every day making posting a little more than I can handle most of the time.  Happy to report that I've been prescribed Iron+C which I hope will help with this ever-falling hemoglobin count.

Subject change:

On Monday during chemo I was sharing with my roomy how happy I was to have had not ONE migraine since before being hospitalized, then last night at 5am I was rudely awakened by just that, a driving spike in the side of my head followed by over the next 10 hours or so, 6 violent rounds of head-pop-off vomiting that left me a sweaty, panting quivering mass each time.  Still nauseous this afternoon and dammit, got sick again today, can't even keep water down.  : /

I thought those days were over but nay.  The meds I usually to take for migraines, (Maltax, a serotonin agonist.), didn't work so good this time, even after two doses and I hope that this is not going to be any kind of regular thing again as it just wracks me to the bone and now that I have to take so many meds at so many different times, the vomiting makes that very problematic.

Aaaaanywho, today is a new day and with it, (after a huuuuuuge nap), I'm sharing the latest news from chemo land that is:  due to recent disease activity, this was not the final chemo session.  I will need at least one more, to quote the doc.

Whoa.

 +++vibes

Sleepy-J

Wednesday, April 24, 2013

"A Lovely Daaaaaaay"

Hiiii, Friends & Readers,  

Just wanted to make a post to share some good stuff--and now I've got Bill Withers gracing the soundtrack, which is an even bigger bonus as I love that song.

I woke up this morning feeling well rested--and well I should be after sawing MAJOR wood for what was surely 12 hours, (not including the usual frequent pee breaks, of course ; ).

Today, so far, (and it's only 11:50am), has been VERY productive, enjoyable, sunny and WARM and I'm milkin' it with Tony.

After a fine berry musilx breaky with my favo decaf espresso from, (and I hate to admit it), Starbucks, I slapped on the knee braces, the sun screen, set my pedometer to go and hit the streets, heading for the river with T where we did a fantastic 4.11kms@ 4.35kmph in 55 minutes, including some stair work.

Came home just drenched, pleasantly drained and cooled off in the back yard with T in the sunshine.  Even gave him a gooood brushing to help that Spring coat blow .

Here's the sweet lil fuzzer getting his roll on:
Had a blessed hot 'n bubbly bath, got some laundry going and soon, I'll be enjoying some roasted green beans with a filet of Tilapia for lunch.

This is all a MAJOR contrast to yesterday which was, overwhelmingly and amazingly challenging.  My chi was near non-existent from about 1pm on, leaving me just a sedated-looking mass of semi-consciousness for the rest of the day, drifting in and out of sleep and only getting up for snacks and pee breaks.  I managed to eat a yummo shrimp supper with P and then hit the sack like a led zeppelin straight to this morning.

I think this has much to do with my now rather low hemoglobin count as well as low iron and today I faxed my doc asking what we can do about it, along with some other Q's on other matters.

And perhaps my improvement today is in relation to last night's shrimps?  Don't know if things work that fast in the ole bod, but it makes sense at least.

Hope he gets back to me soon and in the mean time, MORE SHRIMPS TONIGHT, as they are particularly high in iron, while being not over the top in potassium and that's a perfect combo for me these days.

So voila, just wanted to share some positivity, if only to balance out the extreme zombified state of yesterday that honestly, at a couple points, left me in quiet tears of utter flabberghastation.

But today is a NEW DAY!

Be well, be swell 'n thanks for reading,

: J


Tuesday, April 23, 2013

The Beans are Jumping!

Hello, All,  

Just a quick pop in after retrieving the bi-monthly blood test results today to share that my kidney filtration rate, (and I first typed "flirtation" by mistake, heheh), is up ANOTHER two points since last time!

It is now at 35 and well into the category of Stage 3 CKD, which is just music to my eyes.

All the electrolytes are normal too, (though the potassium is at the max), and while the hemoglobin is getting pretty low, as is the iron and I may need to be treated for that, in general, it's a pretty GOOD report card with only a few levels that are not right. 

I sure would like to get off this BP med that not only steals my voice but causes me to retain even more potassium than I normally would being a kidney patient, but alas, as that drug also apparently helps improve the kidney's filtration rate, I'll just keep a lid as best I can on the K-rich foods until this 6 month attack on the MPA is a wrap.

In other medi-news, I had a Doppler scan done today too on my left ankle, (which has been slightly swelled for years now and since the chemo, has begun to hurt).  I am happy to report that at least vein-wise, all is totally normal in there.  The scan technician thought it might be more of an articulation issue and  I'm sure more scans will be done on that eventually but for now, so far so GOOD.

So boom, there it is, 35, YAY.

Wishing you all well with good vibes for the week,

: J




Monday, April 22, 2013

Suspense…

Hello again, Juan Day Readers,


And I thought the weekend was a bit of a nail-biter, what with the big ANCA blood test taken today which I found out takes a whole week for the results to come back.


As mentioned a couple times here and on fb as well, I am rather anxious and excited to see those results as they will show just how much progress has been made by all these meds to arrest the development of the Microscopic Polyangiitis thus far.

It’s been a long haul since that fateful eve on January 10th, but in the same breath, I’m more than happy to be at the stage I’m at in it all now, with only ONE MORE chemo session to go and over the course of the next two months, the Prednisone will go down to only 10 mgs/day.

This also means that all these other daily meds I’ve been taking because of the heavy immuno suppressive therapy will, as I understand it be finished with too and YAY!  No more daily antibiotics, no more buffers, no more vaccines and hopefully soon, less/different BP meds too as I’m really not liking this loss of voice on an almost daily basis until the evenings. 

At least tomorrow I can pick up the usual blood work results, (electrolytes, kidney filtration numbers, hemoglobin and leukocytes etc.), always interesting to me as I’m continuously experimenting with exactly how many and how much of the “forbidden foods”, I can get away with and still have stellar electrolyte levels.

For eg: lately, I’ve been sneaking 3-4 crumbled walnuts into my morning muslix and it’s DEEEEEEELICIOUS, and so many wonderful healthy oils in them and keeeerrriiiiist in a smart car, do I EVER miss nuts.

Anywho, just wanted to keep ya’ll posted as I’ve been a lil quiet lately and this is the reason why.  Also because I’ve been sleeping like a marmot since this last chemo session.  Feels soooooo nice and I know it’s healing me even more.

So voila, wishing everyone a great week and take good care of yourselves.

+++vibes,

: J

Monday, April 15, 2013

Smellin’ Salts, Please...


Good, Good Morning, Readers, 

After a bit of a fainting spell yesterday after supper, it’s clear to me now that a meeting with my Nephrologist is highly in order to amongst many things, discuss reducing my BP many meds.

The ole blood pressure went down to an all-time-low of 105/47.  

The photo on the left here taken just after I came outta the rather twitchy fog I was left in and methinks that that, coupled with how I’m consistently getting normal BPP readings of for eg: 125/75 in the mornings, BEFORE taking any of the three BP meds I’m on is reason enough to start talking about removing some of them from the regime. Or, at least decreasing the doses.

That, coupled with the bummer that one of them, an ACE inhibitor he put me on a couple of months ago, is really messing with my voice, often reducing it to some kinda Joe Pesci-impersonation is also a MAJOR reason for a BP meds tweak.  “I can’t do mahhh wohhhhhk!”

And, MENTAL NOTE: This is also good reason to start doing LESS as yesterday was a pretty full day for me, housework-wise, with usual morning dog-walk, plus a friend over for tea for the first time since opening up our beautiful solarium.  All without a nap and I clearly just did TOO MUCH.

Sometimes, I actually forget that I'm recovering from a serious, life-threatening illness that if left unchecked back in January, most likely would have taken me out via total renal failure or a heart attack or stroke.

I GOTTA remember that no matter how good I get to feeling (at times), no matter how bright the warm sun is shining, I am not yet healed and I must act accordingly.

In other news, this week I’ve been rather distracted, excited, a bit scared and uber-curious about the BIIIIIG blood tests coming up likely this coming Monday, when I’ll be getting blood and urine tests done which will check on the progress of the arresting of the Microscopic Polyangiitis, by testing the ANCA levels in my blood, (those being the white blood cells, the abbreviation standing for “Anti-neutrophil cytoplasmic antibodies”, and the markers of most forms of Systematic Vasulitis.)

I believe they will also be doing more conclusive testing on the kidney function as they’ve requested a urine sample too so hopefully, there will be more info on the kidney-health and improvements to enjoy.
 
So there it is, my Monday mornin’ blog post…
Hope it finds you all out there starting the week in good spirits, with lots of nice plans too.

****THIS JUST IN!!!**** After my faxing him to let him know about yesterday's hypopressure, my Doc called today and after a short chinwag to discuss the low BP as well as some other issues, he took me off the beta blockers! NOT gonna forget to NOT take that lil one tomorrow as it's already in the bag of rejected meds, to bring back to the pharm for proper disposal.

NICER WAY to end this post now, yes? 
 
+++vibes,

: J