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.