Saturday, August 20, 2016

First, an apology and a correction. I am sorry that my recollection, and thus my writing on it, were incorrect. My doctor-turned-friend is going the Big Chemo route; he is definitely gonna just give up and go gentle into that good night. Quite the opposite!

Moving on... (As Steven Colbert the character used to say frequently.) First, I can't tell you enough how important it is to care for your caregiver. Wife got sent off to see a favorite artist/band, PJ Harvey. She came back glowing, and still is.

I have been introduced to an entirely new (to me) medical world. Stravinsky called the organ "the monster that never breathes," but I wonder how he would have spoken of The Hospital, which is a very interesting non-localized creature indeed. I am currently transitioning to a new GP ("internist" on the label) whom I first met during a hospitalization. I really like her, I really connect well to her. But my last guy had what my wife has called a "boutique" practice; the guy who mans the front desk gives great help, but he can only do so much. My new doc has web stuff and all this useful info about prescriptions and even more! I need blood drawn, just go down the hall! Need a podiatrist? We know where to send you, our office makes the referral and their office will call.

A whole new world! But isn't that what traveling the MS Highway inevitably leads each of us...

Things DO change. Constantly; and yet never. Or as afriend said years ago...

Why not both?

Tuesday, August 16, 2016

The next level

Oh, what an adventure yesterday provided. I actually left the house! And went to a new (ish, at least in this context) doctor, an internist affiliated with the big hospital here in Pasadena.

I miss the guy who had been my regular MD. He's off "treating patients" because he's dealing with his own diseases, plus the usual MS gunk.

I really like this doctor, but she and I have some gulfs to bridge; she's not as into acupuncture as I am, but that's now a problem, fortunately. She's not as "with" cannabis as I am, or as my old MD was. But the conversation went as one might expect...

"What about marinol?" She asks.

"Tried it. Doesn't work," I say.

"What about baclofen?" she asks. For anti-spasticity, she says.

"Tried it. Doesn't work," I say."Plus, I didn't like the overall effect. Cannabis works way better. Especially if you the right variety."

For those of you who use cannabis as I do, try Candy Kush. It absolutely zaps the pain and the spasticity. Beats the pants off marinol.

She was very aware of my distrust of the Western medicines. She told me very clearly that everything has side effects, if that's what your (my) problem is, that's a big one.

I told her, by me it's simple. It needs to make me better. Cost of side effects is fine if the drug makes me better. Unlike for example, tysabri that makes your brain turn to mush and then you die. Or use the injectable DMDs that make you feel like shit for a week, and then a day and you feel not bad at all, now you repeat for the rest of your life. As I explained, I already feel like crap for the entire week, the "feeling bad" doesn't need any help. And a far as I can tell,  they don't actually work. Expensive, and painful, but effective? Not so much, as far as I can tell.

But the basic "internist stuff" was great. Talk about digestive and elimination stuff. Talk about hunger and the lack thereof. It was a fantastic visit, and I'm definitely going again in a week or so.

So, on balance good news, doctor-wise, but the Western world doesn't do so good with Chinese medicine and herbal stuff like cannabis. By me, most of the Western-world drugs seem to be a means of moving money around but they basically don't work, as far as I can tell.

So that's my gift for today. Find people who listen. They may start by disagreeing with you, but at least they listen.

And if you can, take it to the next level.

... Find someone who cares.





Monday, July 25, 2016

A good place to start

It's definitely time to visit the "gifts" world... rather than the "barrage of symptoms, creative things not created, especially like the things that used to be so trivial to create,  and a growing list of tragic losses" that seem to be the sine qua non of the life lived with MS. Rather, I think it might be better to explore the gifts that have been presented me. Yes, gifts.

Pasadena has been horribly hot, 100+ temperatures by 3PM. But this morning, it has been more like 72. And the sun is warming, not baking... at least not yet. I had a cup of tea and a superb English muffin, toasted and blueberry jam! I sat outside and smelled the air... looked at the trees and the clouds... Listened to the birds and the city... someone was doing old-school woodworking, using non-pneumatic manual hammers. And then, the power saw, coming from another direction.

In a few minutes, I sat on the veranda puffing at my vape stick. Life was very, very good. And all I needed to do was just be there, and pay attention. No side effects, beyond I dunno... inner peace?

So MS has led me to a place where I sit. And breathe. and listen. Would I like to return to the "beauty making" place? Hell yes. But all things in their own time.

But, at the moment, Thing One is to enjoy being alive.

A good place to start.