An MS meme and a kitchen update (NHBPM 26)

This took way too long to make.

Technically this meme post is a day late, but I spent yesterday — all of yesterday — laying new flooring in the kitchen. Previously, it was half old laminate (which they glued to the slab beneath) and half nasty old carpet.

You can see some of the laminate here:

Not usually that cluttered (ugh!), but everything was pulled of the cabinets for painting.

And some of the carpet at the eat-in part shows here:

I believe the original carpet color was “Musty Grayish Camel.”

Over the weekend, my wife pulled out all the old floor. Did I mention they had glued it down to the slab? With some sort of alien-technology adhesive?

She REALLY loves the new Sawzall.

Here’s a comparison shot of a new scraper blade vs the one that did about half the floor before it finally just snapped off.

And after all that, I spent yesterday laying it all down:

Can I walk today?

Well, “walk” is a relative term.

Am I glad that it’s done?

“Glad” doesn’t begin to describe it. I’m so excited I want to smash a bottle of champagne on the damn thing.

 

 

Where do you see yourself in five years? The evolution of a patient’s goals (NHBPM 25)

What do I stand to lose?

When I first heard that I might have this thing called MS, my first goal as a new patient was to Get Informed. My doctors were the first to admit they didn’t have most of the answers, because each person’s experience with MS is different. There were no crystal balls or prognostic tests to run.

It was frustrating at first, but that open-endedness emboldened me to become the expert on my self and my condition. The preoccupation with learning helped take some of the sting out of an unknown and uncertain reality.I researched everything I could find on the topic. I wanted a map to this uncharted territory I found myself dropped in.

What else could I possibly lose?

After a year or two of getting oriented, I aged out of the honeymoon period of being “newly diagnosed” and became just “a person living with MS.” My goal changed to Endurance. I knew everything I needed to know about MS — it sucked.

This was a darker period. I hunkered down and prepared to take the blows as they landed, but surviving and thriving are worlds apart. I started to settle for a life of subsistence, unhappily.

What have I got to lose?

Once the vision thing happened last year, though, my goal as a person living with sometimes-disabling MS became Push the Limits. This disease may take things from me, but I needn’t abet it by surrendering a single. thing. more.

What if I trip while training for a 5K? So what? Run all the miles.

What if I dyed my hair purple and looked ridiculous? What if it looked awesome? Do red next. Then pink!

What if I can’t do something next year, or in ten years, that I do now everyday? I’ll find new ways, because I’ve done it before.

The important thing for me to remember is that everything does evolve. A mantra that I adopted during the endurance stage is “Everything is always changing.” It sounded more neutral/honest than saying things would improve, which felt like a lie much of the time. Still does.

But remembering that everything is changing helped me get through painful procedures and long days and nights, in part by priming my brain to carefully observe, mindfully, and watch for the slightest changes. Whatever was causing me grief, well, even that was changing: sometimes fast, sometimes slow, but nothing, NOTHING, is permanent.

Because even if a diagnosis or an ache was my new companion for life — even if that part of the equation might never change — there would be ripples of change in something related to it, something neighboring it. My reaction to it, my coping with it, my expectations — something would change and get more tolerable or actually better, or at the very least, a new threat would become an old threat.

Because if nothing else, time changes. And luckily, I do, too.

What would you do with more hours in a day? (NHBPM 24)

Things I would do every day if I had more time in a day:

  • go to the gym everyday, instead of 3 times a week
  • shop for the freshest produce and meat every day, instead of just once a week
  • organize the pantry
  • take my dog for long walks 3 times a day, instead of just once or twice

    Lula in a sunbeam
    Lula in a sunbeam
  • actually read all the blogs in my google reader every day, instead of just hitting “mark all as read” so I don’t feel like I’m falling behind
  • actually comment on all the blogs I read, instead of thinking “I’ll get around to it when I have more time”
  • go thrifting!
  • turn some of the ideas in my inventions notebook into real prototypes
  • finish my movie before the competition deadline in January
  • raise chickens, for eggs
  • raise goats, for fun
  • raise hell, for eggs and fun
  • actually moisturize the dry places
  • always drive a different route to get places
  • figure out how to speed up this socialist wealth redistribution scheme I keep hearing about

Things I wouldn’t do even if I had all the time in the world:

  • read all the EULAs and TOSs for the sites I visit and apps I use
  • wear makeup
  • dust
  • eat soysauges
  • go to the circle of hell known as the mall

What would you do, or not do, with more time on your hands?

An attitude of Thanksgratitude (NHBPM 22)

More than anything, I am thankful today for enough. Having enough, being enough, doing enough.

I don’t want to have it all. I want to have enough of the things that matter– food, shelter, love, life — and I am richly blessed to have enough of all of these. Certainly more than I deserve.

I don’t want to be all things to all people. I want to be me, and be enough to enough people, and I am. Amazing when a birthright feels like such a privilege.

I don’t want to get so busy trying to do it all that I don’t enjoy the experience of being alive. I do enough things to stay busy, and sometimes to even be helpful. I also planted roses last month that I am happy to stop and smell.

(omg this nerd plants metaphors in her yard, call the HOA!)

My aspirations may be too modest. But there have been times in my life where I felt like an empty sucking hole of want disguised as need, and that’s about as miserable as it gets. There’s no life in a black hole like that, and no identity. Only need.

Enough is enough.

I am thankful for learning to recognize that I have enough and to let it fill me up and slosh around and spill over.

Everybody has an opinion on complementary and alternative medicine (NHBPM 20)

I am all for complementary and alternative approaches to treating and healing disease (and dis-ease). I think of complementary and alternative medicine (CAM) or therapies as anything your doctor can’t write  you a prescription for or your insurance company won’t cover (but probably should). Even mainstream lifestyle factors, like diet and exercise, fall under the woo-woo umbrella, as do interventions like acupuncture, meditation, and journaling.

We have little to lose by trying more diverse treatments. Chakra cleansing? Maybe not…but maybe. It’s worth looking into. I certainly don’t expect all of the possibilities to work like magic for everyone, any more than I expect Tylenol, Advil, and Aleve to be totally interchangeable.

At the very least, we could finally start to learn which new therapies might actually work, and which might not.

I was born skeptical. I don’t take anything at face value, and I’m suspicious of everyone’s motives, and yes, that includes my own. I’m agnostic about life, not just religion; nobody has all the answers. How could they? We don’t even know all the questions. Caveat emptor, etc etc.

I’m suspicious of the paternalism and empirical prejudice of the western model of medicine, which assumes traditional, natural remedies are dangerous or useless until proven otherwise. But if nobody is willing or able to do the research to create a body of evidence, we can’t expect to learn more about safety and efficacy, or danger and uselessness.

But just because there’s a body of evidence and FDA approval for treatments doesn’t mean they’re safe, especially when they can be prescribed off-label or combined in ways they shouldn’t be combined. Last year, the CDC found a fourfold increase in deaths from prescription narcotics over the past decade — the equivalent of a death every 19 minutes. Even OTC meds like aspirin and other NSAIDs sicken and kill thousands of people a year.

Here are some of the leading MS treatments and some of their potential  or certain side effects. I’m not even going to mention the pain, fatigue, diarrhea/constipation, rashes, or severe allergic reactions that could coincide with the use of these, and just about any other, medication.

  • Tysabri (natalizumab) — weakened immune system, infections, liver failure, and “a rare brain infection (PML) that usually causes death or severe disability.”
  • Avonex (interferon beta 1-a) — “flu-like symptoms” [my translation: 2 days of fever, chills, crippling fatigue, bone pain, and abject misery], heart failure, liver failure, suicidal thoughts, hallucinations, “decreased peripheral blood counts in all cell lines, including rare pancytopenia and thrombocytopenia,” seizures.
  • intravenous corticosteroids (used to treat acute relapses, but some people do them every month) — weight gain and swelling in the face, high blood pressure, high blood sugar, osteoporosis, cataracts, bleeding in the stomach and intestines, lowered resistance to infection, death of bone tissue caused by a restricted blood supply to the bones (usually the shoulders and/or hips), psychosis.

With friends like these…

I’m wary of the multibillion dollar pharmaceutical industry that hasn’t developed a cure for any illness since…what, polio in the 1950s? And even that was a vaccine, not a true cure. Have we cured anything since antibiotics were developed?

They’re all too willing to sell me “treatments” to “manage” my disease,  as long as an insurance company or the government cosigns for the cost. My last MS medicine — a daily pill to manage the disease by maybe preventing relapses and maybe slowing down the accumulation of disability — had a retail price tag of $48,000 a year. That’s $131.50 a day for something that could neither cure my disease nor save my life.

The manufacturer of that little pill, Novartis, graciously/suspiciously covered my monthly $50 copay, making my out-of -pocket costs $0. But that left my insurance company spending some confidentially-negotiated amount between $0 and $48,000 — and probably closer to the astronomical end of that spectrum.

The word “unsustainable” comes to mind. Why not diversify before we’re forced to?

But before I sound completely like a raving woo-woo devotee, know that my distrust isn’t reserved exclusively for nameless, faceless corporations with shareholders and bottom lines. I don’t entirely trust people who can trace the root of all their problems to artificial sweeteners  dental fillings, or heavy metal intoxication. I’m equally skeptical of people who swear all their problems have been solved by this week’s snake oil, chinese herbs, beesting therapy, a raw diet, or giving away belongings.

But you know what? I’m glad they were willing to try something different. They get the spirit of what I’ve talking about, if not the letter.

Do you think CAM can work alongside allopathic medicine?

Questions I have for other patients (NHBPM 19)

Questions I have for other patients:

1. Before your experience of acquired disability, did you know that  disability is not a neat duality? I was surprised to find it’s not black/white or on/off or able/disabled. (Same goes for continence. Oi.)

2. Did your doctor encourage you try using mobility aids, or did you have to figure it out yourself?

3. Also, assuming you have periodic check-ups with your neurologist, how do you communicate to your doctor about the totality of your experience living with MS? I wrestle with knowing that what they see of me on any given day may not at all represent my day-to-day health or ability.

4. Am I the only one to figure out that the mental components of your coping toolbox are as important, or even more important than, the physical resources you bring to the fight?

5. Do you find the “help us find a cure!” and “let’s all cure it” and “fund a cure!” messages really stilted and distasteful, especially when it’s coming from the major national organizations dedicated to your disease? Research is important, of course.

But what about things we can change or improve now to make life easier for people with a disease that may or may not ever be curable, things like more flexible work schedules, more telecommuting, more accessible housing, medical cannabis, better public transportation, more cohousing options for adults and families, etc etc etc? A cure for MS would only benefit people with MS, whereas systematic social and infrastructure changes could benefit everybody!

6. In magazines and on websites for people with MS, have you also noticed the mismatch between the moderate-to-high level of disability depicted in images and topics related to living with MS versus the happy words used to flog a hopeful, positive prognosis? It makes me suspicious that they know something they’re not telling me.

7. For those of you whose blog is based around your condition, how in the world do you keep it up?! This 30 day streak is wearing on me, and I get the feeling I may never write  about MS again once it’s over. (“It” = the 30 day streak, not the MS; see notes on “cure” above.)

What questions do you have for patients with MS, or any other chronic illness? Ask away, and I’ll do my best to share, find, or make up an answer.

If I could change one thing about health care (NHBPM 18)

…it would be to bring the communication methods into the modern day.

Harness the power of email, the internet, and smartphones to make communication between patients and providers possible, easier, and more efficient. It sounds revolutionary, because it would be.

I assume there is antiquated quasi-legal precedent for privileging telephone and facsimile communications as private and secure. But that is laughable, and you don’t have to slide very far on the the paranoid spectrum to see the potential problems.

Maybe when you call the doctor’s office, the receptionist doesn’t put you on speakerphone. But how often does she have to repeat back your name, symptoms, and phone number, just to make sure the message is received? How often is the receptionist seated at or near the waiting room and/or the checkout desk? How often are there other people in the room — within earshot — who have absolutely no legitimate role in your care?

Q. How is this better and more secure than sending an email to your nurse or doctor?

A. It’s not.

I hate talking on the phone. I do it as little as possible. It’s awkward, inaccurate, and temporally inconvenient.

I also do not send faxes except under extreme duress. Faxes are inconvenient to send and receive, and even once you’ve managed that, how many legible faxes have you ever received? That could be anybody’s signature on that records release — or is it a birthdate or their pizza order?

When will I be able to request a doctor’s appointment online, the way I do with my hairdresser?

When will the insurance company be able to email me all my “not medically necessary” denials, instead of sending them through the mail?

A playlist for MS (NHBPM 17)

Create a playlist for your health.

Done! You can read the highlights here, and click here to hear it all on 8tracks. Hear, hear!

Generally Unwell

“You’re body’s a dream that turns violent” (Catch My Disease by Ben Lee)

“Now no doctor’s medicine
Will do me no good
Lord have mercy, children
I wished it would” (I’m Sick, Y’all by Otis Redding)

“Baby, if you never got sick, I wouldn’t get to hold you” (If You Never Got Sick by The Wallflowers)

“How long you think that
You can run that body down?
How many nights you think
That you can do
What you been doing? (Run That Body Down by Paul Simon)

Specific Symptoms

“There’s someone in my head but it’s not me” (Brain Damage by Pink Floyd)

“Ooh, when it gets through to me, it’s always new to me
My double vision gets the best of me” (Double Vision by Foreigner)

“Her name is ___, her eyes are ___” (Her Name Is… by George Jones)

“Sometimes it’s like someone took a knife, baby, edgy and dull
And cut a six-inch valley through the middle of my skull” (I’m on Fire by Bruce Springsteen)

“She’s holdin’ leg wonderin’ how to feel them” (Legs by ZZ Top)

“You’re what happens when two substances collide
And by all accounts you really should have died” (A Nervous Tic Motion Of The Head To The Left by Andrew Bird)

“I’ve lost my sight, but not the vision” (Reboot the Mission (feat. Mick Jones) by The Wallflowers)

“And I’ve got one, two, three, four, five
Senses working overtime” (Senses Working Overtime by XTC)

“Oh Mom, I wonder when I’ll be waking
It’s just that there’s so much to do
And I’m tired of sleeping” (Tired Of Sleeping by Suzanne Vega)

“But when she gets weary
Try a little tenderness” (Try A Little Tenderness by Otis Redding)

“And after all the violence and double talk
There’s just a song in all the trouble and the strife
You do the walk, yeah, you do the walk of life” (Walk Of Life by Dire Straits)

“You spin me right round, baby
Right round like a record, baby” (You Spin Me Round (Like A Record) by Dead or Alive)

“You got the gift to give me parasthesia” (Pins and Needles (w/ Fujiya & Miyagi) by Project Jenny, Project Jan)

Rolling with the Changes

“And falling is like brand new rain,
Places I have never been” (Another Country by Tift Merritt)

“I’ve stumbled on the side of twelve misty mountains,
I’ve walked and I’ve crawled on six crooked highways,
I’ve stepped in the middle of seven sad forests,
I’ve been out in front of a dozen dead oceans,
I’ve been ten thousand miles in the mouth of a graveyard,
And it’s a hard, and it’s a hard, it’s a hard, and it’s a hard,
And it’s a hard rain’s a-gonna fall” (A Hard Rain’s A-Gonna Fall (Bob Dylan cover) by Edie Brickell & The New Bohemians)

“Miniature disasters and minor catastrophoes
Bring me to my knees” (Miniature Disasters by KT Tunstall)

“I smoke old stogies I have found, short but not too big around
I’m a man of means by no means, king of the road” (King of the Road (Roger Miller cover) by Rufus Wainwright)

“Last years troubles they shine up so pretty
They gleam with a luster they don’t have today
Here it’s just dirty and violent and troubling” (Last Year’s Troubles by Suzanne Vega)

“Life is sad, life is a bust
All you can do is do what you must
You do what you must do and you do it well” (Buckets of Rain (Bob Dylan cover) Beth Orton & M. Ward)

“How can I explain to you?
How somebody can get so very blue, now
How can I tell you about my past?” (Mr. Pitiful by Otis Redding)

“And I’m tired from all the weight
Tired of being strong
So won’t you come and stay
And let me lay
Down in your arms
Down in your arms” (Troubled Mind by Catie Curtis)

“Ch-ch-ch-ch-Changes
Turn and face the strange” (Changes by David Bowie)

“This ain’t no party, this ain’t no disco
This ain’t no fooling around” (Life During Wartime by Talking Heads)

“When all the parts of the puzzle start to look like they fit
Then I must remember there’ll be days like this” (Mama Said There’d Be Days Like This by Van Morrison)

Working with Doctors and Meds

“Now I want to understand
I have done all that I could
To see the evil and the good without hiding
You must help me if you can” (Doctor My Eyes by Jackson Browne)

“And after all that she’s been through
Oh the doctor say: “There ain’t nothing we can do”” (Long Line of Pain by Amos Lee)

“He said my epidermis was darling
And found my blood as blue as can be,
He went through wild ecstatics
About my lymphatics,
But he never said he loved me” (The Physician (Gershwin cover) by Janet Klein & Her Parlor Boys)

“Cuz I know that I don’t belong here
And I know the pills don’t work for me no more” (The Pills Stopped Working by Hem)

“Shook my soul, and stole my dough
Left my condition down a deep dark hole
I’m a pincushion, gotta face the facts
I’m just a pincushion, do everything she ask” (Pincushion by ZZ Top)

Still Alive

“If I got my hopes too high, this is no easy kind of life.
But I see it in my mind’s eye, touch me real as daytime,
I can’t keep from trying” (Hopes Too High by Tift Merritt)

“Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise” (Blackbird (Beatles cover) by Sarah McLachlan)

“I’m still alive, and I will survive
I can take what life’s got to give, just need a little time” (Still Alive by Social Distortion)

“Don’t let us get sick
Don’t let us get old
Don’t let us get stupid, all right?
Just make us be brave
And make us play nice
And let us be together tonight” (Don’t Let Us Get Sick (Warren Zevon cover) by Jill Sobule)

“It’s a pity, it’s a crying shame
Who pulled you down again?
How painful it must be
To bruise so easily inside” (Life Is Sweet by Natalie Merchant)

“I don’t know nothing except change will come
Year after year what we do is undone
Time gets moving from a crawl to a run
I wonder if we’re going to ever get home…
So many things that I had before
It don’t matter to me now
Tonight I cry for the love that I’ve lost
And the love I’ve never found” (When It Don’t Come Easy by Patty Griffin)

“Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm gonna try with a little help from my friends” (With A Little Help From My Friends (Beatles cover) by Joe Cocker)

“Here’s what I find about compromise-
Don’t do it if it hurts inside
Cause either way you’re screwed,
And eventually you’ll find
That you may as well feel good
You may as well have some pride” (Second Time Around by Indigo Girls)

Coming Back Strong

“‘Cause I’m back on the track
And I’m beatin’ the flack
Nobody’s gonna get me on another rap
So look at me now
I’m just makin’ my play
Don’t try to push your luck
Just get out of my way” (Back In Black by AC/DC)

“Flip another breaker
Crack another fuse
Check, check, check, a hey, hey one two
Gonna make it baby, even if I have to crawl
Gonna hit full speed, even if I hit the wall” (Smoke Another by Cross Canadian Ragweed)

“I am going to make it through this year
If it kills me” (This Year by The Mountain Goats)

“Well I was born to run
To get ahead of the rest
And all that I wanted was to be the best
Just to feel free and be someone
I was born to be fast, I was born to run” (Born to Run by Emmylou Harris)

“Here comes a comeback
The kid is back, back on track,
And there goes my hero
He’s an underdog, he’s coming out on top” (Comeback Kid (That’s My Dog) by Brett Dennen)

“Things are goin’ great
And they’re only gettin’ better
I’m doin’ all right
Gettin’ good grades
The future’s so bright
I gotta wear shades” (Future’s So Bright (I Gotta Wear Shades) by Timbuk 3)

“So I try a new direction
I’m going to give myself a resurrection
I’m getting ready” (Getting Ready by Patty Griffin)

“if tomorrow never comes
i wont give a damn
if tomorrow never comes
i will not be afraid to meet my maker
just the way that i am” (If Tomorrow Never Comes by Todd Snider)

“Now, I don’t care what you think
I’ma do my thing tonight
I came to dance, came to drink
Livin’ that disco life
I burned about a thousands cals
Dancin’, movin’, shakin’, groovin’
So fuck what my trainer say
I’m finna get a hot dog (A-a-a-a-a-a-after this club)” (Hot Dog by LMFAO)

“And you know
I’m so wired up
Don’t need no coffee in my cup
Let it all hang out” (Jackie Wilson Said (I’m in Heaven When You Smile) by Van Morrison)

A comic snapshot from my life (NHBPM 16)

Our side-by-side refrigerator has a little sub-door so you can pull out milk or drinks without having to open the whole door. I think it was really cutting-edge, somehow, back in the mid-90s when the fridge was made.

The outside of the little sub-door is basically a whiteboard, and we leave notes for ourselves and each other on it. It’s much more useful than the energy-saving drink access.

The notes we leave often come with little drawings, usually stick figures since we are more of the word-artist ilk.

I was pretty proud, though, of the one I left yesterday for KK. We were finally going to see the new Bond movie that evening, and she’s been looking forward to it all year.

I learned early on to use a little extra creativity to mitigate my utter lack of artistic skill. The ladies seem to like it.

Bonus bulleted tiny movie review:

  • I liked this Bond better than the last 20 or so. It had a stronger mental/emotional story component and just a touch less senseless violence — which made it classier and more essentially Bond-like.
  • It also had my favorite opening credit sequence of any of them, by far. The visuals were so rich and polished to that they even managed to make Adele sound legitimate.
  • Daniel Craig’s naked muscley arms make me want to [blushingly redacted] but also they make me want to move into the gym and not come out until I have my own pair.
  • I decided that 80% of Bond’s power comes from his supernaturally well-tailored clothes. (The other 20% is from his arms.)
  • After the movie, I proposed a new sobriety game, where you take a shot every time Bond blinks. The man is a machine.