Saturday, February 27, 2016

Today's prescription

It has been a while since I shared with you, gentle readers,

A "symptom" thing y'all might need to know, someday, I hope not, but you never know...

I had a pretty low-grade fever, maybe 100 and a small amount, something like that, but that completely whacked the MS stuff. I could barely transfer from bed to wheelchair and back, especially couldn't do things like once I got my butt back onto the bed, to get my feet up onto the bed... had to call for help from my caregivers such as my ever-caregiving wife. It's bad enough that I'm MS-withering as it is, it gets worst with a fever.

Well, that's gone and I'm back to what passes for normal for me, 98.1 and such. But transfer works as it has for a while, well into "good enough."

And here's another not-at-all fun thing... my eyes have gone whack. They point in different directions. Like Simsons eyes.
See how the one on the left doesn't point in the same direction as the one on the right? That's the idea...

I'm going on an adventure to my optometrist next Friday. We'll see what comes of it. Perhaps "find out" rather than "see" is the operant verb, but we'll ... see.

And a prescription from my acupuncturist... keep "finding the funny." I have been having a hard time simply dealing with fingers going bad at gripping things, what little precision is required of typing, a steady diet of "I'll put this here..." and then "Nope."

My vocalizations of well, I guess despair is the best way to encapsulate it, is unfortunately very similar to the ones the "Jerrys" give in the couple's counseling episode of Rick and Morty. And it is definitely not an example of "find the funny."
It's a sound my wife especially dislikes, and it's only fair and reasonable and understandable, so out of compassion for her alone I need to break myself of the habit. So again here I am called to change the thing most in my power to change... attitude, if not consciousness.

So that's today's prescription. Which I can freely pass along to you.


Saturday, February 13, 2016

Go for the gold

A delightful little piece on YouTube, about kintsugi, the Japanese art of embracing damage.

Broken pottery is repaired, but with gold.

More of the delight of wabi sabi, the beauty of impermanence.

And this is what the MS experience asks of we who follow--who have been set upon--that path. We are definitely broken, our happy comfortable lives that we were so used to have been completely changed by the MS experience. And yet, we can repair the broken pots of our lives with gold... the same gold that the MS experience itself provides.

My own personal MS experience has brought me new ways to experience the world. Often, to share compassion with those who need it, even when they're not present. To really, really, enjoy the simple beauty of the sweet scent of the air turning ever so slightly springwards, away from winter. Yesterday, I heard house finches, for the first time in months. My wife walks across the house grousing about wearing the wrong whatever or looking down in the dumps, and yet all I see is beauty.

There was a huge energetic cost to journey to the tea shop, and yet every morning that I make the dark oolong tea that I got there, I absolutely love it. Was it worth the two days of not doing even remotely well and barely even having the wherewithal to feed myself -- no energy even to eat well, certainly not to eat and enjoy... But the simple pleasure of truly good tea, truly well made, is indeed a golden experience.

So, my MS-accessorized friends... Time to go for the gold.

Monday, February 8, 2016

Better is...

Ah, attachment. Subtle, amazingly sneaky.

So, I'm again off-loading some things I don't use any more. One was (is) a black cape... not fancy, but nice, and I have always loved capes and always enjoyed wearing them. They don't work so well with a wheelchair, which nowadays has sartorial priority.

But this I couldn't eBay or sell to anyone... this one needed to be given away. To someone who would make it live again, someone who would enjoy it and make the most of it.

That's its upcoming destination... the recipient is coming to pick it up in a few days, as soon as his wife gets over her winter cold/flu/nasty whatever. My own non-flu-accessorized wife is organizing this, and she says he already loves it.

Love makes things easier to give away. I'm not "giving it up," I'm just relocating it. With love.

And that's not "getting rid of" something. It's making someone happy.

Which makes EVERYTHING better.

Better is... better, isn't it?

Sure is!

Saturday, February 6, 2016

Some things never change, it seems

The amazing interfacing with companies that have their tendrils wrapped around Medicare (age puts you there, eventually...).

So as someone in the Cath Club, I talk to my providers about the next shipment of catheters, and I ask them to send me more of the goop they provide because their goop is better than the stuff I've been getting from Amazon, and could they send me more? What little they send isn't enough for that full load of catheters, after all...

So this sheaf of paper arrives, asking me to do all this justification, asking for information regarding the stuff the insurer doesn't want to provide and why exactly do I need it?

There is, alas, no "try sticking a hose up your dick without lubricant, and you tell me how well that works out for you" check box.

I had also thought "Just send me a bill and I'll write you a check" would be a good middle ground. Apparently not. It's spend a couple of hours trying to puzzle out this form and also send us a check. instead. And all this for the tremendous figure of $8. Can't just send a check. Gotta have a multi-page form.

Clearly the people in the news who are bloviating over "Obamacare" versus single-payer versus oh, let the insurance companies take care of everything because the Free Market is God... aren't in the cath club, fighting against people who'd rather put profit over comfort. Or safety....  Bad, bad things can happen if you don't cath as much as you actually need to, no matter what the people who have never met you have made decisions about your needs and thus no interest in finding out what your actual needs are.

In other news, I saw an interesting YouTube offering about the difficulties, maybe impossibilities, about curing cancer, specifically that there hasn't been a cure because there isn't just one cause for cancer. Yeah, cancer's uncontrolled cell division and everyone who has it experiences that particular symptom, but there are so many different reasons that cancause this, that there isn't a single way to stop it. Does this sound familiar to us MSers? We have symptoms in common, but the MS expression/presentation is different for everyone who has it, maybe there isn't just one problem that needs solving? So why do people always reach for the same three or four DMDs, all of us MSers come to realize eventually that at best, they maybe work and even better maybe don't screw you up too awful much... maybe.

Well, that's a great way to lift your spirits, ain't it? So, in the face of all that, what do we do?

Enjoy what can be enjoyed. Make tea. Smell the freshness of the winter air, especially on the days like we occasionally get here in southern Cal that warm up enough to be fun to go outside. Talk to a friend and laugh.

No side effects. So, as best you can...

Enjoy simply being alive. It's possible, it's there waiting for you. Just find it.