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.