Thursday, October 29, 2015

Halloween Apples

Ghostly Greetings,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Halloween weekend, y'all!



Tuesday, October 13, 2015

Hand Botox?

Hi, Readers,

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

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

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

And frustrating.

And limiting.

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

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

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

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

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

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

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



Thursday, October 1, 2015

Mountain Mawwwwma

Hello, again, Readers,

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

It was, in a word, SUCCESS.

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

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

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

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

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

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

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

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

I really enjoyed my time with that lil guy.

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

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

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

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

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

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

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

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

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

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

*dead air for a few flabbergasted seconds*

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

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

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


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

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

Made the moments all the more precious.

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

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

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

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

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