Saturday, October 31, 2015

Adventure enough is, well...

Well, it's Halloween as I write this, or Hallowe'en if you want to spell strictly,  the evening before the day the Catholic church ages ago dedicated to all the saints, so all-hallows (all saints's) day gets all-hallows evening, or all-hallows-evening which became hallow-even or hallowe'en.

Or, if you prefer the Celtic calendar, tonight will be Sambhain, or as more people spell it "Samhain," gotta love those crazy celts and their wacky spelling and pronunciation. (Used to be the name of our cat, now of blessed memory, but that's another show.)

Sambhain is the time that the veil between worlds is at its thinnest; a good time for scrying, fire ceremonies, and other celebrations and mysteries.

Ah, if life with MS could only be handled with a really cool fire ceremony. I don't think even Burning Man can do it.
Festivals or no, times are dark, if you don't mind the metaphor. I had a friend over yesterday, when I booked him I had hoped that it would be a good day to adventure off-property, maybe get some lunch while we were out. Nope, yesterday was a stay home and pretty much stay in bed. Sleep if I can. My friend was over anyway, he's an amazing caregiver, he was perfectly happy to poke at his own computer as he fought with the state's something-or-other system, watch the occasional cartoon--he really loves Rick and Morty, and I'm so happy to share it with him because I love it too.
But my life is basically get up, enjoy some time in the Cath Club clubhouse, go back to bed, listen to cartoons or YouTube--I've been digging the "Crash Course In..." series--and try to sleep, if I'm lucky. I have zero interest in eating (it's no wonder that I'm 130 pounds, if that), I'm usually sorta kinda willing to sorta kinda try and at least eat something, but it's tricky to find what will interest me that is also accessible to my fading manual dexterity which is also actually nutritious. Breakfast is easier than other stiff, lunch is always the feeblest eating.

Lord, I never thought I'd come this way. Who can predict where having MS will lead you? I knew before I got The Diagnosis that my legs were on their way out, but zero creating and zero leaving the house and zero "go have fun" adventures because I just don't have the oomph for them, and even matcha doesn't help.

Earlier this morning I placed an order for this really really cool kind that comes from Munich, Germany. I don't really count ordering from German websites as an "adventure," although it is one, in its own way. Kinda.

I made a call yesterday to a longtime friend affiliated with This Important Place. Said place has developed... issues... that I'm really glad never came my way. Not all adventures are worth having.
But, as Alton Brown often said, that's another show.

So, the small morning victories...  write a blog post, send a note, place an order. Make tea, set up for making it for Karen when she gets up, go start the morning Bathroom Stuff. Come back to the kitchen, make and have breakfast, go to bed and stay there until the Cath Club calls for attention. See to that, then go back to bed. Repeat the last two steps.

Enough adventures, transferring from the wheelchair to the bed or the commode. Which, given the times I hit the floor because my legs gave out under me, is adventure enough.

Adventure enough is, well...

Not just enough, but plenty.

Tuesday, October 27, 2015

Your choice

Seth Godin's marketing (not MS, hoo boy, not MS) blog this morning talks about "Bravery is for other people."

I suppose people might call my attitude towards the MS Experience as "brave," but basically, what else do I have to do?

My transfers from wheelchair to commode involve doing my best not to hit the ground. Is that "brave," being willing to kinda get up and kinda walk sorta with each hand firmly contributing to keep moving? No, it's do it or don't make it to the commode; basically, there's no other option. I can freak out, or I can keep not hitting the ground.

I am reminded of the time I was on the back of a motorcycle and my friend (the driver) gooses the bike up to 80MPH. Shortly, he stops by the side of the road and says "Most people freak out when I go that fast, but you didn't."

I said, "I figured that anything that detracted from your driving, like freaking out, would be a Bad Thing. So I didn't."

Apparently, nobody had ever done that before. Not freaked out to make things better for everyone.

And during the not-freaking-out adventure, it was kinda cool, riding at 80 on the back of a motorcycle.

So that's the lesson for this morning, MSers. Find the fun. Or find the funny, because there often is something very funny about the moment.

So, freak out, or enjoy the ride? Laugh, even?

Your choice.

Saturday, October 24, 2015

We take what we can get

Massively huge difference yesterday.

In the company of a very strong, resourceful, and patient friend... I went "off campus."

I left the house. Got into a car. Was driven to a nearby, but different city. We had tea, and I kinda ate something for kinda lunch. (Disinterest in food has been happening for decades, so that wasn't a "feature" of yesterday's adventure. Besides, the leftovers await me for lunch today. Which, I expect, will be quite enjoyed... at least, a little.)

Then we got back in the car and went to a herb shop, which as my aforementioned amazing friend described, had some really amazing stuff. I used to swear by a place in Santa Monica, but this is (a) wicked closer and (b) wicked better, I think this is a change we definitely gotta work with.

It took a wicked lot of energy, and for various reasons we were off-campus during the Great Weakness hours, 1-ish to 4-ish in the afternoon, which meant my getting into and out of the car involved Said Friend basically dead-lifting me out of the wheelchair and getting me back into the car. But we made it. I made it.

We also agreed... we're doing this again. It was, on the bottom line... fun.

We may be able to fine-tune hours of going and being off-campus, anticipating the "I really need to lie down and close my eyes and go into neutral" hours that have been arising every afternoon, regardless of location.

But it was HUGE to leave the home property.

Whatever it was that I had been fearing... it didn't happen. Yeah, we need to fine-tune things, but going off campus is at least doable.

Lunching off campus isn't really a good idea yet, but going off campus... that's doable.

My wife may not be the best person to do the transporting, with me needing to be dead-lifted out of the wheelchair when my leg-strength goes away during the mid-afternoon low times. But leaving the house is definitely doable, and doable with at least a little enjoyment.

We take what we can get.

Thursday, October 22, 2015

From time to time

The saga continues. I hear that the conference that I usually speak at, open! has been progressing apace, and it seems that the hotel hosting it is of course celebrating Octoberfest and trashing the whole facility, adding beer and bratwurst of course, excusing the trashing of everything.

This bit... I don't miss.

Insurance nonsense continues... I gave up hoping for insurance to come through, I sent a message to doc about "Is this 'keep trying different prescriptions given that we already know which one works really a good idea?' especially the bombardment of cruft I get from the MS Pharma world, offering different things that will make everything better and then don't, but they sure cost a lot, like $100+ per day for the rest of your life, what a great idea, what about THAT one?

This "keep trying stuff when we already know what works" thing falls into the category of "What, are you high?"
So enough of that. Time for more tea.

My wife has found some interesting "get friends to help" apps on the web, when they work out (or don't) I'll share them with you, for those who need or want friends to help folks like me (us) who too often need help.

But... from time to time, who doesn't need help?

Well, those of us who still have problems fusing... We don't have it as easy as some do...

Wednesday, October 14, 2015

We'll find out

The recovery from our dear little cat's transition is moving ahead quite well. Wife and I still see and/or think of her as we trundle through the house, but we're both doing OK. Karen reminds me that she's had some sort of Special Pet Friend since pretty much middle school or thereabouts... pretty much non-stop; a brief pause after the transition of the beloved pet, and then another one sought us out. So, we have a very good track record of Animal Friends and Us finding each other, so hope springs eternal. It's gonna be fine!

Another call to the urologist's office to try to sort out this prescription/insurance battle. Apparently, it seems, I need something called "pre-approval" before doc can even ask about whether said drug is OK to prescribe. I don't get this at all... isn't the whole "prescription required to dispense drugs" thing essentially, at the bottom line, about "approval?" Doc has "approved" of me taking this, and has moved onto the next stage: wanting me to take it.

But no, some nameless faceless entity who has never met me and knows nothing of me or the history and details of my interactions with various pharmaceuticals, They have to Pre-approve before the person who actually knows me is allowed to do what he knows will actually help me.

"Helping the patient" seems to be not a goal of The System.

... Great. ...

There is a special place in Hell for those who chain up the system to maximize profits at the cost of... everything else. At the cost of the patient's health.

Primum nihil nocere, the Hippocratic Oath requires. "First, do no harm." The insurance company is practicing medicine without a license and breaking the First Teaching of medicine: First--literally, first-- do no harm.

So... they suck. Moving on.

I've been enjoying new powdered green matcha tea that I picked up from Germany, of all places. I'll probably zip off to make some for my wife, then off to the bathroom for the Morning Bathroom Stuff. A story you don't want to hear more about. Trust me. I also paid the final installment for Autumnal Fun of Property Tax stuff, so that's done.

Who knows what the day will bring? Phone predicts gentler weather today, I'll see if I can plant something in Nuala's Garden (the name we have chosen for the backyard plant glory). I'll see if I can maybe type something from bed using my nifty bluetooth keyboard with my iPad. Get something else done, maybe? Or give up now, because I'm already starting to run out of juice?

We'll find out...

Monday, October 12, 2015

On we go

Things are going well after the farewell to Nuala. Both my wife and I are dealing with Our Things in our own way, and that's OK. It will be a while before we hear (think we hear) a noise somewhere in the house and think immediately that it's the cat; Karen says she has gone through the house looking for the friend she can pick up and cuddle and... the little one isn't there. At least not in a cuddlable form.

The usual "final cleanup" things still get seen too, each in their own time. The cat food in the refrigerator, Nuala's bowls of water that haven't gotten picked up, washed, and put away. Yet.

As I told our vet on The Night, "I didn't cry over getting MS. I didn't cry about not being able to play, or even sit at and operate, organs any more. But I am crying about my poor little cat." It was a hard night, and continues to be hard, but gradually the "hard" is backing down.

And now, we return to the standard make-you-scream fights with the insurance company. The pill my doc wants me to take works far better than the one the insurer wants me to take, but of course I don't need the one doc prescribed. I need the other one. I'm gonna call doc's office today and see if he can do anything about it with them;  he told me he has this kind of fight all the time.

What a great way to spend the fleeting moments of our lives, here on this little earth. Fighting with the insurance company that, apparently, cares not a whit of anything besides their bottom line. Which I understand a company cares about, but really? Telling me that I don't need the drug  the doctor says I need and that is tested and proven to be a superior help.

I don't need it... Really. Do tell me, how do you know? Do you even know what I look like? Or what I look like when I have to deal with you people?

So, then...

On we go.

Sunday, October 11, 2015

Well done, MS

This to some may be off the "what's up with your MS?" mainstay of MS blogging, but I need to share this, at least...

Yesterday, we set our precious little cat free from her old, frail, and failing body. She loved us, and adored being with us; but oh, as all us mortals eventually come to the same place, she was pretty much done with that old body, time to cast it away and be set free.

We thought that a very poor final gift was to put her in the box she hates, drag her to the office she hates, and have her last experiences in this mortal coil be unpleasant... But instead, we took her to the back patio. Karen made the whole back yard shine with beauty, putting candles out and even some roses, sent by a friend's daughter (who may not have had any idea of what was planned) that just lifted us all.

We were graced by Dr. Robin Holmes, of a group here in Pasadena called Gifts of Peace. Karen quite correctly told Robin last night, "You're a pastor." She ministered to us as well as the dear little cat. I'm sure many of my readers aren't in the Pasadena (just east of Los Angeles) are, but if you come to this difficult place, you want people like her to help you.

A very hard time, a very beautiful time, a very precious time. Wheelchair and all mattered not a bit, and being "disabled" actually enabled me to cradle Nuala in my arms and let both of us be at peace with... everything. We MSers are ... inconvenienced, let's use a gentle word, by things like wheelchairs, but last night, it didn't matter.

Today is the first day since we moved in here that we haven't had Nuala with us. She loved it here since the day we brought her over, she had spent her life as an indoor cat before, but when I showed her the cat door, joy simply radiated from her--"You mean I get to go outside?"

There is but one more thing to do, to close out... Robin will bring ashes back in a special, and beautiful, box. And, as I promised and Robin agreed... then we'd have tea, and celebrate together.

So what were MS's gifts, in this intense time? Being able to hold the cat and not care about anything because the chair was holding both of us up. Living in a world where I have immediate, personal experience of "this body ain't nothing" and feeling that the truth of the moment, and the touch of the warmth of spirit, is what really matters.

Well done, MS. Well done.

And so the next chapter begins. As I said to Nuala last night, I won't say goodbye. You'll be back... after all, she already is. Somehow, somewhen, somewhere.

And when we reconnect... we'll both purr.

Saturday, October 10, 2015

So, physician...

So the saga of the 19-plus-year-old cat continues in an unusual way... My wife took her to a Special Animal Doctor Place yesterday, where they did all this stuff and such, but my wife described it as a very dear, caring, gentle place.

Not like a human doctor visit, eh? I mean, one's MD may be gentle and kind, but the waiting room? Full of happy patients and their caregivers? No wall-mounted TV saying that "If you die, ask your doctor if XYZ is right for you," or any of that nonsense.

Apparently, the doc told my wife, those happy people and animals are all chemo patients. Ever hear of human chemo victims being radiantly happy?

Apparently, doc said, they don't use even close to the nearly-killer dosages they use with humans. Their goal is not to eradicate the disease, but to keep it contained. And, more importantly, to help the animal to live comfortably.

Now that's a goal, ain't it? Live comfortably?

My personal MS experience, and let's be honest, everybody's MS-experience is personal and completely unique despite maladies we share ("Everybody with MS goes through this," my urologist told me about joining the Cath Club), is that nothing helps. Nothing makes things better. But there are things to do that increase comfort... Take a little of these herbs, have some tea, keep the air conditioning going at whatever level is comfortable, pet the Cat while we still have her, listen to things that warm my heart.

Comfortable is a very, very worthy goal. Which having been attained, is darned comfortable.

Now, how would the western "treat MS" world be different if the primary goal was "get the patient comfortable?" I certainly don't think being ravaged by DMDs that do nothing but make you feel worse counts as "comfortable." As certainly, allowing one's self to sink into the mire of "it used to be so wonderful before The Disease" or whatever, that certainly doesn't count as "comfortable." That, at least, is non pharmaceutically treated: Change your consciousness and your world changes.

Try that, DMDs. Bitter, moi? Probably. Definitely...

So then,  "changing consciousness" to increase comfort...?

No side effects there...

So, physician... Heal thyself.

Friday, October 9, 2015

Why not us

Had a truly wonderful acupuncturing yesterday. Not nasty painful or anything, and when these five-element folks really connect with you, you feel great. I'm getting to the point where I start to feel great before the needle comes out. Not always, but often... More each time.

Had wonderful talks about the sorts of things that are, to my perception, actually getting in my way. All she did was listen, she offered a couple of suggestions, but mostly it was listen. No judgement, no here's how-to-fix-it (even though I don't really understand what it's about), just listening. Very reassuring, very supportive, and who knows? Her next idea may be the thing that really gets things changing. We'll see.

Dropped a note to a college friend of mine, his wife has The Disease, but she's doing good work in, his words: "Engaging the world." This is very hard for me... engaging even the world of my home and studio is too often beyond me. That was very much the topic of my chat with my acupuncture-caregiver yesterday. I try to do X, and here's how it fails... here's how I fail, let's be fair and accurate.

I blame little to nothing. MS isn't something to blame; depending on whom you ask, it doesn't exist--the Chinese say it's just the name us westerners give our symptoms, but there is nothing extant behind those symptoms. Naming it and blaming it gives it power, and who among us needs to give power to things that don't exist?

My dear wife is having to deal with our beloved cat who's clearly coming to the end of this part of the adventure. She's 19 and a few months, which web-friendly cat-age calculators says she's starting to edge up to the high 90's in human years. Things stop working (well, I certainly know how that feels), and I feel so bad for my poor wife who not only has to be caregiver to failing husband but now has to run around with Cat to radiologist, oncologist, the list keeps expanding. And we both have to deal with the Usual Question about how much cash to sink into the aging cat, and the inevitable confrontation of "Yes it's expensive, but not trying is something that will have too high a cost, too."

We MSers deal with this ourselves. New MS drug, they say. Costs a million dollars, they say, for the rest of your life. At least we get to see that other people try it, it doesn't work, so there's no point in coughing up the million bucks.

Doesn't that make us feel better?

Actually... no. But it does save us money. Which we'll then spend on the Cat, it would seem. Or not. We'll see. But we can definitely do whatever it takes to keep her happy and comfortable, so that whatever time she has with us will be enjoyable.

And if that's good enough for a cat...

Why not US?!?!?!?

Thursday, October 8, 2015

In a word...

The cool and wet seems to be getting replaced by the dry and hot. Again. Well, that's LA for you.

I'm getting an acupuncture treatment at home later today. You can't beat house calls! I miss my Olde Time Guy, with whom I still stay in contact, both as an MD and as a friend, but the new person is gentler and has a different spin on her treatments, which is working out well for me. And she has a young one who likes Adventure Time and Steven Universe, so we're in very good shape there!

Did some business that needs doing...first installment of California property tax, for example.

I'm finding that I'm still dealing with electronic business pretty well... property tax, mortgage, DWP stuff, car payments, those all go well. People ask for music, I send it--just sent something to Kansas! But I don't do at all well with the "put a piece of paper into a folder" businessy stuff... find the right folder is somehow very challenging. Thank God for automatic payment systems via the web! They make everything so much simpler.

Fights with the insurance company continue. The usual nonsense, I say I need this, doctor who prescribes it says I need it, insurance company says I don't, I call the doctor, he says dammit yes he needs it, insurance says no he doesn't. I suppose when all insurer really wants is to collect money, e.g., I pay the insurer, they pay out nothing & therefore get more money, it's a great gig, I guess. Cash-wise, at least.

Dropped a note to an old college friend of mine who recently got diagnosed with breast cancer, kinda bad but kinda not bad, at least not the almost-kill-you-with-chemotherapy kind; we've been chatting about the various kinds and benefits that cannabis can provide. We used to do a lot of it informally in college, so it's not a vast gulf to jump, but us MSers know this all too well. Will Thing X help me? Who can say? Well, try something, did it work? Can't really say...

In a word, it's very...


Monday, October 5, 2015

Amazing symptoms

Keep your mind active, They say. It's important, They say.

Well, here's a way to start off the day, exercising the mind. Quite something to do so casually, knowing technological history a I do...

This morning, I ordered some extremely high quality Japanese matcha from a company in Munich. Website is entirely in German. So I had to figure that out, using what German I remember and some poking around a few dictionaries. It may arrive 10/15. It really is a great way to start the day, and the Germans have beat the Japanese at their own game. It's quite lovely stuff, gentler than what had been my standard in ceremonial tea.
It's interesting, and kinda sad, to see how some of my neurologically accessorized bloggers have been reporting their "adventures,"  and how they've been withering too... My herbalist said that the Chinese medical folks call MS a "withering disease," and man, have I been withering. And from what I read, so have they.

Neurological that goes bad doesn't get better. Except when it does. But as to how, when, or even whether that will happen... nobody knows. Time after time that I was in the hospital, visiting doctors said "Oh, that's neurological. We can't help you."

Not exactly promo materia medica, "We can't help you." It's a little more personalized than "Nobody can help you," but that's not saying much.

So what are we left with? Do the best you can with what you got.

Given what I used to do as a daily matter of course, just firehosing material with next to no effort, calling adding a couple of notes "a triumph" because it was what I could do today... I gotta admit, there a serious change-of-mind required.

But this is a very interesting thing that we are called upon, as the MS accessorized... Change your mind. 

Sounds easy, don't it? Well, it IS easy, if you're willing to work at it and to stop working against it, which is harder than walking out of your wheelchair.

Be here now, as Ram Dass is famous for writing. Well, for me, "here and now" doesn't seem to include a lot of sitting at the computer and creating. But here and now is here and now, so that's the challenge: Be here now.

Quite an amazing "symptom" of this disease...