Just say, “No, Doc.”

I’m my parents’ son, but it’s a different world today than the one they lived in. My parents came from a place where the doctor knew what he (back then it was a man, more often than not) was talking about and they did what he said, no question. He had the white coat hung on his shoulders, the diplomas hung on the wall, and the stethoscope hung around his neck. He knew best. They were like poor Brian Regan at the doctor.

Although I’m the child of my parents, I’m also a child of the 60’s. We learned to question authority, including doctors. The arrogance and god complex of many medical practitioners has hung in there long after they stopped prescribing bloodletting and Radithor. Here are a few real life examples of the arrogant behavior that gives me pause:

Doctor: “Don’t eat anything on this list.”
Patient (pointing to a confusing entry): “Why is this on the list?”
Doctor: “Just don’t eat any of them.”

Patient (on being diagnosed with MS based solely on a single MRI): “I thought an MS diagnosis required multiple symptoms?”
Doctor: “I know what I’m doing. I’ve been doing this for 30 years. You fit the profile.”

Doctor: “No more trips to Haiti.”

Doctor (to patient in wheelchair): “Why don’t you have a power chair? I guess you just like to be pushed.”

Dermatologist: “Put on SPF15 sunscreen every day. And if you go outside, put on SPF 30.” (Sunscreen indoors? What world are you living in, Doc?)

Neurologist: “MS doesn’t cause pain.”

Neurologist: “MS isn’t the cause of your clumsiness.”

Doctor: “You can’t disagree with me.”
Patient: “Why not?”
Doctor: “Because I’m the doctor.”

It doesn’t take many encounters like those before the naiveté of my parents melts away altogether, replaced by the cynicism I now subscribe to.

Never has there been a better reason to question doctors as there is when dealing with MS. They’re just flailing away at this beast the same as the rest of us. As my doctor once said, “MS keeps you humble.” (That’s why she’s my doctor.)

I remember standing up to my (former) neurologist. I’d been on one of the interferon drugs but had developed the nasty NABs (neutralizing antibodies). Who knows how long I’d been plunging  a needle into myself for no reason? This being before the advent of oral meds, my options going forward were limited:

Tysabri – Hmmm… It kills about 1 in 1000 people who take it, 1 in 100 with certain risk factors. Yeah, I think I’ll pass on that one. I don’t like the odds.

Copaxone – A shot every day? Not sure I want to lower my quality of life that much, thank you very much.

That’s when I dropped out of the DMT scene. By the time newer, less perilous options became available, I was doing so much better under my PB&J regimen, I decided to stick with that.

The lesson here isn’t (necessarily) to give up the drugs, it’s to stick up for (not just stick a needle in) yourself. Don’t be bullied by doctors, the medical establishment, or advertising. It’s your right (dare I say responsibility?) to ask questions. You know your body and your condition better than any doctor. You are your own best advocate.

If you don’t do it, who will?

It’s safe to say that this blog will never get an endorsement from pharmaceutical companies or MS organizations with such counter-cultural views, but I have to practice what I preach: Advocate for myself. If someone else is helped, so much the better.

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MS Years

I ate lunch today at one of my favorite local spots, Cafe 12. Great food, great desserts, and the best apple turnovers I’ve ever had. And that’s saying something. It’s also a cool place to linger for the purposes of conversation or writing.

I was with a relative from out of town who asked how long the cafe had been around. Amazingly, it’s been four and a half years in a location that had previously been a black hole for food purveyors. He commented that, the restaurant business being what it is, its age was equivalent to about 75 human years. That’s a perfectly apt comparison.

When I got home, my inbox contained an email notification that the very-young-looking-for-her-age Yvonne deSousa had just published a new post in her MS blog. In that typically clever post, she comments that her “body feels like it’s aging at the rapid rate of two years every day”. That figure might be an exaggeration, but the sentiment is right on.

Having MS virtually speeds up the aging process.

Look, you’re gonna lose your vision, your strength, and your bladder eventually, but MS pushes you into it a lot sooner than anyone would expect or desire and usually faster than we can mentally and emotionally adapt to it. You’re fully justified in feeling cheated if, unlike me, your world view contends this life is all there is.

To make matters worse, the process can’t be accurately quantified because it isn’t consistent across the disease’s targets. If you want to find the human equivalent age of an animal such as a dog, cat, or iguana(!), you can use a handy chart like the ones on these pages. (It turns out that the classic 7 dog years to one human is a myth. Who knew?)

Not so easy with MS. One person in a progressive stage might advance a decade in a single year, while someone with a more benign course might add no more than a couple of weeks in the same span. And that could change year to year. Heck, it could change day to day, person to person! It all brings to mind something I wrote previously:

…to paraphrase the immortal Joaquin Andujar, MS can be described with one word: you never know.

That statement feels as true to me now as it did when I wrote in one of my first posts over seven years ago.

I don’t know what that is in blog years.

(NB: Cafe 12 is not handicapped accessible. As an advocate for accessibility, this annoys me. Under normal circumstances, I’d avoid a place like this but I know it’s not the owner’s fault. Her landlord doesn’t want to make the investment. I don’t want to punish a quality local business because of a landlord’s greed and insensitivity. Besides, I’m hooked on the apple turnovers.)


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One more thing I hate about you (MS)

There are plenty of reasons to hate MS. No need to go into all of them here. If you have MS, you know. If you don’t have it, you don’t want to hear about it. Anyway, I’m not sure there’s enough space on the internet to note everything bad about MS. But I want to write about just one more.

Doesn’t it stink that some of the triggers for MS attacks are also symptoms?

It just ain’t fair. Think about it:

MS is a very stressful disease. Worrying about the future. Battling insurance companies to get coverage for tests and meds and all that other crap MS requires. Anxious about money problems caused by all the simoleans you gotta spend to pay for all that crap insurance doesn’t cover. Worried you’ll look like a fool tripping and/or peeing your pants and/or dropping your coffee… And what does all this stress do? You got it: It brings on another exacerbation.

MS loves to cause UTI’s. It seems every person with MS gets one at one time or another. So what happens? You run a fever. What does that do? Puts you flat on your back until the temp comes down.

Involuntary body movements or spasms, often in the legs, sometimes painful, are a common symptom. I don’t know about others, but they get worse as the day wears on. By bedtime my leg (or legs) is so out of control I look like Elaine Benes trying to dance. What are the odds I’m going to fall asleep in that condition? Yeah, somewhere south of zero in a million. So I don’t sleep well. So in addition to being fatigued by MS, I’m wiped out from lack of sleep, which of course can… say it with me… cause an MS attack.

This was driven home when I read a paper from an MS meeting. It said:

Severe cognitive fatigue and anxiety were found to have an effect on MS patients’ visual learning. Specifically, cognitive fatigue had an effect on visual learning, such that cognitive fatigue had a significant effect on Trial 2. When controlling for severe cognitive fatigue, anxiety had an effect on patient’s learning for Trials 1,2, and 3. Anxious MS patients and those with severe cognitive fatigue on average scored lower on all three visual learning trials than those without the aforementioned symptoms.

My MS-addled brain has all sorts of problems trying to parse that message, but what I deduce from it is this: Anxiety, fatigue, cognitive problems, and learning are all wrapped up in this incestuous relationship that’s just one of the factors that make MS so “interesting”.

I didn’t need a study to know this. I experienced it aplenty in my work life. Sitting in a class trying to learn a new technology, I’m not sure which was the most dominant problem: the fatigue, the failure to understand, or the stress at knowing I couldn’t learn the stuff I needed to do my job. In the end, it was a dead heat.

I got so stressed, I… I forget.

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It’s not easy (or cheap) being green (or good)

`I try to do right as much as possible. Call me old-fashioned, but I believe there are some things that are “right” and some things that are “wrong”. That puts me out of favor with popular culture, but I’ll keep dancing with the dinosaur, as Steven Curtis Chapman sings.

One thing that’s right is reducing our footprint on this world of diminishing resources. So I recycle (only after refusing, reducing, and reusing, of course). That can be a hassle and it can cost a bit more to buy recyclable products*, but it’s worth it for the sake of my children and grandchildren. That’s another belief that has fallen out of favor: Living for the benefit of future generations. It flies in face of the Veruca Salt culture in which we live.

It’s also not cheap to eat well. All the MS diet advice we get involves consuming organics and specially processed (or unprocessed) foods that are more expensive and harder to come by than the run-of-the-mill offerings at your local grocery store. So you race around to Whole Foods (not called “Whole Paycheck” for nothing), Trader Joe’s, and farmer’s markets to get the Good Stuff. Just one more way MS is an expensive disease.

Yup, doing right for yourself or others eats up more money, time, and energy. But I wouldn’t want it any other way. Doing good should involve sacrifice. (Ask Jesus. He knows first hand.) One of my favorite stories in the Bible is a brief episode about King David buying some land from a guy so he can make an offering to God on it. In a blatant attempt to suck up to the powers-that-be, the land owner tells David he’ll give it to him for free. David wants no part of the deal. Instead of going for the freebie (as most of us would), he responds:

No, but I will buy it from you for a price. I will not offer burnt offerings to the Lord my God that cost me nothing.

David gets it. If he gives something that costs him nothing, he’s giving nothing. It’s not the thought that counts, it’s the sacrifice.

Do good because it’s good, not because it’s easy.

*  An excellent case in point is the ubiquitous Styrofoam. It’s almost impossible to avoid and even more difficult to recycle. And it’s forever. Why are we still making/using this crap? And what am I supposed to do with it?

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Bag the bags

[The worst thing a blog can become is a vehicle for venting. Nobody wants that. Occasionally, though, I have to let loose and channel my inner Andy Rooney. Sorry.]

What’s the deal with all the bags at grocery and other retail stores? Yesterday I bought a quart of milk in a plastic bottle at a convenience store. (Wicked convenient. I can walk there.) The guy reaches for a bag to put it in.

Let’s be clear: These bottles have handles. The handles are for carrying. Why on earth would I need to put it in a bag? Some bags don’t have their own handles, so they’re actually counterproductive. But even a bag with a handle is superfluous. I’ll buy a bag of chips and they want to put it in a bag. THE CHIPS ARE ALREADY IN A BAG!!! I don’t even want to think what would happen if I bought a bag. They’d want to put it in a bag.

Get a grip.

I’ll be in line at the grocery store. (It should come as no surprise that I have my own reusable bags.) The person in front of me has six items and the bagger puts them in four different bags! How can that possibly be justified??? Even one item per bag isn’t unusual.

Like the woman in front of me who bought a single roll of Scotch Tape and insisted she needed a bag to put it in. She had a handbag the size of the Hindenburg. I closed my eyes so I wouldn’t see her stuff the tape, bag and all, into the blimp. Oh, the humanity.

So our landfills get choked with plastic grocery bags, which never (as in, never) break down. Do any of those people with the bags have children or grandchildren? What kind of world are you leaving them?

It’s time to bag the bags.

There. I feel better now. Even though the problem still exists. Blame Andy Rooney.

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Top Ten things to do while in the MRI tube

If you have MS, you’ve spent more than your fair share of time buried in an MRI machine. It’s a little known fact that the MRI was invented by some obscure cleric during the Inquisition to extract confessions from suspected heretics. It wasn’t until the late 20th century that scientists looking for new papers to publish in scientific journals discovered they could use it to look at the human brain and pretend they knew what they were seeing. (Word is that it’s still used as a torture device by some nonprofit hospitals to compel deadbeat patients to pay their overdue bills.)

Being more than mildly prone to claustrophobia, the prospect of my first MRI was about as welcome as a colonoscopy prep. For my maiden voyage in the tube, I begged for some kind of assistance. I was thinking, “Hit me upside the head with a 7-iron. I’d rather sleep through the whole thing and wake up with a nasty headache than endure a preview of the grave.” But they gave me a Prozac and that did the trick.

Turns out it wasn’t as bad as I’d dreaded. Since that initial episode, a cloth across my eyes and a vivid imagination has sufficed to get me through the trial. The only problem left was what to do with that hour or two lying there in the dark, immobile. Perhaps you have the same problem. If so, I present you with my top ten list of things to do while lying prone in an MRI:

  1. Think of all the people you’d like to cram into an MRI tube, possibly concurrently.
  2. Play head games with the MRI operator. For example, keep squeezing the little ball he gave you and, when he comes running, tell him you didn’t squeeze it. Guess how many times you’ll have to do it before he stops coming to check on you. Another fun trick: Keep yelling, “Get them out of here! Get them out of here!”
  3. Try to remember all the side effects of the DMD you’re taking.
  5. Come up with meaningful ways to spell those sounds. (q.v. my attempts above)
  6. Bring a friend for backgammon.
  7. Pray. You’ll never find a more convenient or appropriate time for it.
  8. Imagine you’re lying on a beach (or other relaxing, desirable location) that just happens to have a sonic background of BZZAAAHHBZZAAAHHBZZAAAHH.
  9. Count your blessings. Think of reasons to be grateful. This has the added benefit of being therapeutic so maybe you won’t have to spend so much time in the MRI.
  10. Write a top ten list.

You can thank me later. Or add your own ideas in a comment.

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The Voice of God

Have you ever heard some spiritual superstar talk about how he or she “heard from God”? My hackles tend to rise immediately upon hearing such talk, invariably in the form of something like, “God told me I should do this”. Worse, “God told me you should do this.”

I don’t know about you, but I’m not that conversant with God that He’s regularly telling me what to do, never mind what others should be doing. I keep up my side of the conversation and look for His response any way and anywhere I can: through friends, His word, nature, and circumstances, for instance. Have you ever directly heard that “still small voice” in your head? I haven’t.

Except once.

Yes, I think I heard the silent voice of God in my head. I’m going to share it here in hopes that it will be of some help and encouragement to my friends with MS.

I was going through a particularly dark time in my life, which was causing me to be cast down in my spirit. (This was not related to MS as far as I know but, as with everything MS, you never know for sure.) Anyway, I was praying, looking for some help to get out of the doldrums, when suddenly, out of “nowhere”, words simply appeared in my head as if they were beamed down from the mother ship or, maybe more appropriately, the Father Ship. The words were:

Philippians 2:4

Huh? Where did that come from? I knew it was a Bible reference but I had no idea what it said. (This was a long time ago; since then that verse has been indelibly etched on my heart.) Being a dutiful Christian and, more honestly, being desperate for help, I looked it up. Here’s what it says:

Let each of you look not only to his own interests, but also to the interests of others.

At first glance, it appeared to have nothing to do with my depressive state. Maybe God put the wrong Zip code on that message and it was meant for someone else. It could be something intended for another circumstance and it arrived too late or too early to be applicable to my current condition.

Or maybe I was imagining it all.

On further consideration, I realized it couldn’t have been more appropriate. I’d been wallowing in my own set of woes, ignoring the needs of others God had put in my path. That’s a perfect recipe for the depression and despair I was experiencing. Getting outside of oneself is the solution to so much that mentally and emotionally ails us.

As the estimable but long-lamented psychologist, Dr. David Rintell has pointed out many times, we can build our resilience by “looking to the interests of others.” Specifically, he says:

Give! Giving to others, in addition to the benefits to those we help, benefits the helper in a number of ways.  Research has shown that giving to others is an effective antidepressant, and it’s a great way to build new social connections.

For those of us with MS, the temptation to pull back inside ourselves, to hide and obsess over our conditions, to look only to our own interests—in short, to be selfish—is great. But it’s also dangerous. Avoid that temptation at all costs.

God told me you should. 🙂

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